Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

Congenital Heart Disease Legislation

 

In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 9/06/17)

Senate Cosponsors – Date Cosponsored
  • Whitehouse, Sheldon [D-RI] – 4/7/17
  • Stabenow, Debbie [D-MI] – 4/7/17
  • Klobuchar, Amy [D-MN] – 4/7/17
  • Baldwin, Tammy [D-WI] – 4/7/17

House Cosponsors – Date Cosponsored
  • Pocan, Mark [D-WI] – 3/28/17
  • Connolly, Gerald [D-VA] – 3/28/17
  • Soto, Darren [D-FL] – 3/28/17
  • Evans, Dwight [D-PA] – 3/28/17
  • Holmes-Norton, Eleanor [D-DC] – 3/28/17
  • Murphy, Stephanie [D-FL] – 3/28/17
  • Swalwell, Eric [D-CA] – 3/28/17
  • Loebsack, Dave [D-IA] – 3/28/17
  • Stivers, Steve [R-OH] – 3/28/17
  • Webster, Daniel [R-FL] – 3/28/17
  • McMorris-Rodgers, Kathy [R-WA] – 3/28/17
  • Abraham, Ralph [R-LA] – 3/28/17
  • Guthrie, Brett [R-KY] – 3/28/17
  • Bost, Mike [R-IL] – 3/28/17
  • Mullin, Markwayne [R-OK] – 3/28/17
  • Nolan, Richard [D-MN] – 3/29/17
  • Fitzpatrick, Brian [R-PA] – 4/3/17
  • Collins, Chris [R-NY] – 4/4/17
  • Velazquez, Nydia [D-NY] – 4/6/17
  • Ros-Lehtinen, Ileana [R-FL] – 4/20/17
  • Sessions, Pete [R-TX] – 5/3/17
  • Griffith, Morgan [R-VA] – 5/19/17
  • Ellison, Keith [D-MN] – 5/23/17
  • Moulton, Seth [D-MA] – 6/26/17
  • Cardenas, Tony [D-CA] – 7/13/17
  • Walberg, Tim [R-MI] – 7/13/17
  • Meehan, Patrick [R-PA] – 9/5/17

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each.  This is anticipated to be reconciled later on in the bill passage process.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Together, we will CONQUER CHD!


Sample email:

Send an email, today!
Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov or www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator/Representative XYZ,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

Water In May

PCHA’s Jennifer Weiner had the great opportunity to receive an advanced copy of Water in May, a Young Adult novel by former Pediatric Cardiologist Ismée Williams. Read on as Jennifer shares her thoughts on the story. 

 

 

Despite being the number one birth defect, CHD is little known in mainstream society (we’ll get there!), so it’s a special experience when we meet characters who have walked in our world in the books we read.  In Water in May we meet Mari, a fifteen year old girl who has gone through life feeling unloved, unwanted. When she learns she is pregnant, she believes her baby is her chance for a real family. But when doctors discover her baby has a congenital heart defect, that family is jeopardized.

As a reader, I loved the vivid world created by author Ismée Williams, the dynamic characters, their distinct personalities, and the fierce bond between Mari and her friends.

As a patient, I related especially to Mari’s experience with Dr. Love, her baby’s cardiologist. Doc, as she often calls him, is compassionate. His concern for Mari is sincere and goes beyond her baby’s diagnosis. Doc does not underestimate Mari. The respect he shows her and his straight forward approach creates a trust between the two, allowing for a sense of security, when nothing is certain. (If you’re lucky, like me, a certain doctor crossed your mind just now.)  Mari and Doc’s relationship demonstrates just how important those with us on this CHD journey become to us and how we can rely on each other, when we don’t know where else to turn.

We may all come from different backgrounds and face different obstacles, but Water in May shows us the unwavering strength we can all find through love.

You can get your copy of Water in May on Amazon.

Jennifer is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing from SNHU. She is a 35 year old adult congenital heart patient, born with Truncus Arteriosus, has had two repair surgeries, and is an ICD recipient. Jennifer volunteers for the Pediatric Congenital Heart Association, both nationally and locally, managing the PCHA Blog and IL Chapter Communications. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.

Mental Health – Catherine’s Story

As we continue the Mental Health Series, Catherine Paour, shares her story with PCHA. Misdiagnosis and a CHD discovered later in life has forced her to face anxiety and urged her to spread awareness. 

 

 

Lots of prayer, purpose and passion has prepared me for a whole (hole) new way of life! I kept asking myself, “What is holding me back from living a life I would love?” I was always struggling and complaining that my lack of energy and stamina was really in the way of me pursuing my dreams after working full-time for the last 35 years and being a single mom to a child.
I’ve been a heart patient since the age of 12, when I was first told I had a heart murmur. I can visualize that appointment perfectly.  At 23, I failed my new hire physical at a local Medical Center, and required a Cardiologist to clear me for employment. In 1997, as a newlywed, I had a Trans Ischemic Attack (TIA), or a mini stroke, and thought I was going to leave my new husband a widower.  I had a baby in 1999, and I was surprised I survived.  In 2002, after a few years of unbelievable stress, when my baby suffered Shaken Baby Syndrome in the care of a licensed day care provider, I begged my Cardiologist of the last 20 years to “dig deeper.” I explained that I simply couldn’t breathe, couldn’t carry my baby, or get groceries from my car to the kitchen. I got resistance everywhere I turned, from being called a hyperventilator, to a hypochondriac, to just plan ole lazy, until finally I was diagnosed with Heart Failure at Urgent Care of all places. Yippee. At age 42? WHAT? How come my cardiologist hadn’t told me this?
 As time went on I was getting worse, shortness of breath, debilitating edema, my legs felt like concrete pillars, my digestion was horrible, my heart was pounding outside my chest, passing out, visual disturbances, wheezing like crazy and missing out of so much of life – it was never-ending. I ended up having not 1, not 2, but 3 Cardiac Ablations, with an additional 3 Cardioversions thrown in here and there. The ER knew me all to well. I was also on a home oxygen tank for a bit, and felt like a fool walking around work with a tank on wheels –  that was not fun. My lung function was always about at 52% with no known cause. My heart failure had no known cause. I thanked God everyday for my Handicapped Parking Placard, and my parents still ran circles around me. I finally bought a used electric scooter to take my son to places like amusement parks and zoo’s, and I excluded myself from anything physical for the last 15 years. This also meant loosing friends and countless opportunities.
And then I found my SPARK!!! I started working with a Certified Life Coach, and I came away with better than I could have ever expected. I made a commitment to my self-care, to “be bold,” and to seek out a new cardiologist after over 30 years.
Within a week, my new cardiologist sat with me in a hospital recovery room, after a TEE, and asked me if I knew or had ever been told I had a giant hole in my heart. He described it as an Atrial Septal Defect – something I have lived with my entire life, undiagnosed!!!!!  My mom and I were shocked, and I accidentally loudly answered “ uh… NO?”
I very quickly was scheduled for Open Heart Surgery at a top notch hospital to repair the hole. The surgeon said the hole was the biggest they had ever seen, and he specialized in this. He said I had a huge atrial aneurysm and the septal wall was basically non-existant. I didn’t have two chambers, just one big “swamp”. The hole measured 6 cm x 3 cm.
I was hoping to have a new found life, and love for it, but I find myself really struggling emotionally with the after effects and the bureaucracy of what I have been through in this experience. Three weeks after a succesful surgery, I went down hill fast and ended up in the ICU for a week with massive heart failure. My EF was at 10%. I had extremely low blood pressure, extremley high heart rate, every tachycardia there is, AfiB, blood clots, plueral effusion. It was terrifying, but I managed through it, finding hope in my future, the Lords breath breathed into my lungs, and my sense of humor.
From there on out, I wasn’t able to return to work. I finally made it to Cardiac Rehab four months later, but  broke my tailbone sitting on an exercise machine. So I’ve been compensating for months and months, and my body is in pain from head to toe. Yet I continue to find the joy in hopefully having a healthier future, and I can’t tell you how hard it is to have every Dr. I see still to this day say, “You’re lucky to be alive”.
I’m back into working with a life coach, writing two non-fiction books, doing some public speaking and podcast interviews.  However,  I still deal with the severe anxiety about my “ex” cardiologist and how my CHD could it have been missed all this time, my fear of what would have happened if I didn’t make the bold move to go to a new Cardiologist, and WHY is my “ex” cardiologist deemed as meeting the gold standard of care in my case.
I also struggle with anxiety regarding my workplace leave of absence, disability plans and managing a less stressful life moving forward. The systems and lack of education in CHD is so prevalent in my community, and I don’t know how anyone thinks they can can endure so much trauma and bounce right back into a very stressful workplace. I’m scared. My short term disability is over, my long term disability has been denied and currently being appealed, Social Security Disability has not made a determination and my place of employment can no longer hold my position, and I am facing termination. Another surgery  is on the horion as well, as soon as authorization is received.
But there is hope, I have faith. EARLY DETECTION is key. It is also important for adult patients to find medical professionals who know how to appropriately diagnose CHD and handle adult congenital patients, without making them feel like they’re just neurotic!

 

 

 

Catherine Paour was born and raised in Torrance California, and is the youngest of 3 children. She was born Frank Breech, which caused multiple orthopedic complications throughout her early years, that has limited her well into her adult years.  She suffered with heart issues all her life and had a cardiologist for over 30 years. Her ASD went undiagnosed until the age of 55. Today, Catherine is very open to sharing her story with a hint of humor to help others who may have to experience similar circumstances and to offer hope and healing about facing open heart surgery to repair a CHD. She is certified as a Vibrant Happy Women Meet-up Coach and continues to find ways to turn her pain into her purpose.

Mental Health – Q&A with A Mental Health Expert

We return, with the first September Blog, to PCHA’s Mental Health Series. Child and adult psychotherapist and CHD Patient, Austin Wilmot, helps demystify mental illness as he answers questions often associated with those affected by CHD.

PCHA: Thank you for taking the time to share with PCHA about mental health and congenital heart disease. As a psychotherapist and someone with personal experience in the CHD community, we are interested in your perspective on the kinds of issues that patients and families deal with. As you know, we recently had two blog contributions—one written by a 26-year-old woman living with CHD, and another written by a mother of a 5-year-old child living with CHD. Both of these are a part of our mental health series, and it was clear that medical trauma and PTSD was a significant topic in both pieces.

Mr. Wilmot: Thank you for reaching out to me to contribute to such an important conversation—one that I think is beginning to happen more and more. I am fortunate to be able to hear and understand many perspectives and experiences from those in the CHD community. As I’ve been thinking about this interview, there comes to mind a particular quote I would like to start with: “Every adult with CHD was once a child with CHD.” I thank the Adult Congenital Heart Association for their powerful reminder of this truth, and I think it opens the door for thinking critically about how early experiences—especially, for our purposes here, the traumatic effect of severe, serious, painful and chronic medical conditions and procedures—impact future development and mental health.

You know, there was a time, not too terribly long ago, when the belief that “babies don’t feel pain” was held in the medical community. An opinion article written for The New York Times titled, “Why Infant Surgery Without Anesthesia Went Unchallenged”, was published in 1987 and sought to draw additional attention to the alarming trend of indifference to pain. Although the practice of withholding anesthesia and postoperative pain relief from babies and small children was essentially done away with by the end of the 1970s, ideas about early emotional trauma stemming from these experiences and the psychological aspects of prolonged hospital stays and medical interventions have only recently, in some arenas, gained serious consideration. Even so, there remain profound gaps in education and awareness by professionals, patients and families. It becomes painfully obvious when one listens to professionals speak on mental health with CHD-related communities without mention of the word “trauma” or when I hear advice akin to how someone can just change their thinking to feel better. In my experience, feeling better is not about willpower. It is about treatment. As you can see from your previous two blog contributors, there is much to say about these traumatic experiences from the parental, familial and patient perspectives that have had an enduring, pervasive effect. I imagine that readers of this blog also have much to say, as well. I invite readers to email me (aw@austinwilmot.com) with their own associations that come to mind about medical trauma in your experience (across the lifespan). Of course, this is voluntary, confidential and would never be linked to you.

In terms of the national discussion intersecting mental health and congenital heart disease, I find it helpful to look at the literature. A recent search of “mental health congenital heart disease” on PubMed (the National Institutes’ of Health literature database) revealed a total of 198 articles total, 92 articles in the last five years—27 of those in the last year. The phraseology of “medical trauma” is becoming more utilized in the literature. A search of PubMed revealed 78 papers ever published with that particular phrase, 24 in the last five years, and less than five that directly relate by search to “congenital heart disease mental health”. A search of PEP-Web, the psychoanalytic literature database, shows 20 papers with “medical trauma” in the paper and only two with it in the title. There was a paper in 1976 and then not much until the 1990s. All of this is to say that the impact of medical trauma and medical intervention in early life (infancy) and throughout the life of a person living with CHD is profound. However, as the most common form of trauma, medical trauma is the least discussed in the literature.

Directly intervening at the level of the inner, emotional world of the child living with congenital heart disease is often avoided or forgotten by professionals and parents or caregivers, alike. Many mental health providers do not know how to tread into helping children with chronic medical conditions, and many parents are afraid or do not know how to talk about such feelings or realities in a developmentally appropriate way. Such conversations are frequently ‘put off’ for later, in the hope that the child can resolve or ‘get over’ anxieties that seem premature or unfounded based on the child’s present medical status (e.g., being alive, having survived). In this way, feelings can become minimized and psychological symptoms can result in manifestations of emotional and behavior problems. It is known in the literature that the prevalence of anxiety, depression and trauma-related disorders is increased in the CHD population, and that addressing emotional distress earlier than later benefits the child and family throughout the lifespan.

 

PCHA: Why has the awareness of medical procedures as a form of trauma been minimal?

Mr. Wilmot: Going off of your word “minimal”, it is something that I believe has been minimized, and at times, denied. “These medical procedures and operations have to happen anyway, so what’s the big deal when it can be talked about later?” – One might ask. Well, there is quite a bit to talk about. So, let’s begin by talking about medical trauma.

Caregivers and medical personnel are well-meaning. However, just because intent is good does not mean the impact follows suit. These well-meaning caregivers and medical personnel may rather see themselves as only good, carrying out helpful acts, instead of as perpetrators of forced, violent, torturous or intrusive acts carried out without consent of the patient. If you really think about the experience of the infant or child, a bodily and psychic invasion is also a valid experience that must be seriously taken up. While good and helpful these individuals are, operating and holding the patient in mind from that first perspective alone will leave the infant, child or adolescent quite alone with another experience entirely—based on their individual, developmental level. For instance, early surgeries can be experienced as attacks on the body, caregivers felt to be in collusion with allowing such attacks and torture on the body at the hands of medical professionals—people that are said to help, but also cause an experience of pain. It takes a particular degree of cognitive and emotional development to be able to understand that the person causing pain is actually doing a helpful, perhaps life-saving act. Additionally, traumatic aloneness can pervade during short- and long-term hospital stays and isolation. “Is this an act of punishment on me?” “I am bad.” “The world is dangerous.” “I am dangerous.” “I am not safe.” These are examples of personal, internal meanings that can become embedded as a traumatic, overwhelming experience is reckoned with by the mind and brought into relation with self and others. Again, this depends on the developmental level and unique set of internal and external resources of the patient.

As an aside, circumcision is an example of routine procedure that did not begin with concomitant interest in understanding the inner, psychological impact of what that kind of action could effect on the psyche. In that arena, there is greater dialogue and consideration given to the mental and emotional impact of having someone else decide what is done with someone else’s body. Since intervention in the case of CHD is almost always required to prevent death, this can provide another reason as for why the impact of intervention is not thought about. “One had to have surgery to survive, so one must be grateful and happy to be alive.” Or, “you would have chosen to have surgery anyway, so just get over it.” If those lines of thinking are the only allowed stance, then there can be whole swaths of emotional experience blocked from exploration or expression. This can leave someone emotionally deadened, disallowing feelings in a similar way to suffering with survivor’s guilt. “I survived such and such an experience, or survived longer than so and so, so for me to enjoy more pleasure doing or pursuing such and such as a means to thriving more would be ungrateful, selfish and impulsive“. That line of thinking, again, forecloses the exploration of one’s own full spectrum of feelings and capacity for aliveness.

As I related to earlier, the idea that babies feel and remember pain (physical and emotional) has had all sorts of resistance to it. Firstly, it can be a difficult idea to bring into one’s mind and think about—it forces one to think critically about past, present and future relational experiences involving baby and interventions that have been or will be medically unavoidable, even routine ones. This can be hard to do when parents are traumatized themselves and/or are trying to metabolize so much of what is happening already with their newborn. The idea can itself be paralyzing for some caregivers that find it challenging to make the move from overwhelming guilt anxiety and shame (believing that they are bad parents for having an infant with CHD, feeling inadequate as they are forced to hand over their baby to those that can provide what they cannot, as well as various distortions in thinking such as construing the birth of this infant as punishment that they are due, etc.) to constructive, useable concern and curiosity about the inner world of the infant (how to go about repairing the effects of stress and trauma on early attachment, for example, in later psychotherapeutic consultation). Secondly, having an awareness for just how influential early life is on future development is something that is largely easier said than done. Why? A lot is happening at an unconscious level in early life that lays a foundation or template for the development of personality and relating. Depending on the level of psychological mindedness of the parents and capacity for reflection on their own histories, it can be a tall order to cultivate an empathic stance grounded in seeking an understanding of the inner world of the infant, a world that seems far removed from the immediate adult experience. “Well, I’m fine, I don’t have memories of being an infant and I made it through hard times. And, baby has shown how strong he/she is by being such a fighter and heart warrior”. – One might hear. This kind of response involves a difficulty in seeing the infant as a separate being with a separate mind, as well as an identification with the aggressor wherein the parent repeats their own past, infantile or childhood experience of being unattended to while in a state of distress, perhaps by their own parent. Professionally, I do not deny a healthy resilience, but I also do not deny the reality of emotional scars that may seem initially invisible.

It is important to note that just because the mind of an infant does not yet have access to elaborating experience with words does not negate the existence of an inner world with meaning-making processes that are working to digest moment-to-moment interactions and external stimuli—a baby that is trying to make sense of its environment and the information coming in from all senses. A baby is very vulnerable in his or her state of absolute dependency. When baby cannot be protected from harm, even due to well-intentioned, necessary medical intervention, the protective parental environment fails, yielding overwhelming affective states such as extreme anxiety and helplessness. This is where stress becomes trauma—when the intensity of the frightening events become unmanageable to the extent that physical and psychological integrity is threatened. These states and adaptive responses to stress can become traits, maladaptive coping patterns and consolidate into a particular attachment style, for example. An infant has then appropriate reason—danger—to resort to the use of extraordinary intra-psychic defenses to protect against such profound helplessness and other feeling states that would be overwhelming, but these come at a psychological cost. The use of these defensive strategies over time can contribute to future psychopathological outcomes—problems that can manifest in development with various symptomologies without proper psychotherapeutic treatment. I will not go into detail about the above here, but know that emotional muscle can be built at any age to address the need for mastery of feelings and promote restoration to progressive psychological development. This I will explore with you later.

It is in the mind of an adult, however, that I have us consider the impact of defensive thinking, namely “magical thinking”, in the context of how medical trauma becomes minimized or denied. Everyone uses magical thinking at different times, especially when stressed, to deal with realities in life that if one were to become too aware of would lead to feelings that one may not have the capacity to cope with or wish to think about. An example of this is someone who has certain rituals or routines they use to self-soothe—actions that when carried out provide a degree of relief from anxiety, but are based on an illusion of control, a fantasy that they have more control over circumstances than they really do. “If I avoid stepping on the cracks in the sidewalk, then all will be well and this bad thing won’t happen.” When one is presented with a stressful situation, traumatic perhaps, there is a strong pull to regressively deal with circumstances through magical thinking and action. We see an example of this in how CHD has sometimes been talked about. There have been many discussions and confusions around a “fix” for CHD—many patients even falling out of care based on a perceived understanding that they are “fixed”. I would contend that some of this is due to the actual wish for a “fix” and magical thinking that eliminates CHD in the mind—pushing it out of awareness. This obviously is not good because CHD continues to exist and may make itself known in crisis form when the individual is forced into emergent medical consultation. This, unfortunately, is not uncommon as some people reaching out to speak to a Heart Ambassador with the Adult Congenital Heart Association do so because of a change in their medical status—individuals who have waited as long as possible, until there is trouble, to reach out and (re)start thinking about their CHD. Of course, improper medical advice and misinformation is also a factor in thinking one is “fixed”. Additionally, some medical professionals (physicians, surgeons, etc.), idealized and imbued by their patients with a god-like omnipotence can, due to their own psychological conflicts, participate in a collusion by fulfilling the parental wish for nothing less than “rescuing my baby from death and fixing their heart for good”. The words doctors, surgeons and other professionals use during these intimate, critical moments and throughout care are incredibly meaningful and must be attended to carefully as pressures and expectations can run high. Fortunately, more medical knowledge about CHD has reduced the chance for gaps in understanding CHD as a lifelong condition warranting lifelong care. However, there are stories of cardiologists not specialized in CHD care that have contributed to problems in how their patients think about their condition and future. As you can see, transition from appropriate pediatric to adult care is an important topic that has psychological, as well as physical health implications. We can explore that later, too.

In general, I think that a collective form of magical thinking can become employed to deal with these truly traumatic realities for all involved. A delusion of omnipotence manifests—a distortion of reality, a falsehood, is clung to that control is possible in the face of shear uncertainty, helplessness and powerlessness—commonly the very feelings felt by parents and many medical personnel experiencing their own reactions and feelings in the provision of care. “Just take him home and watch him flourish”, or other such remarks (this one made post-heart surgery and after two weeks of NICU care with emergent crises), although incredibly well-intentioned and reflective of significant medical progress, leaves out reference to how that infant will remain, proverbially, on the heart monitor and in a psychologically traumatized state unless attunement is brought to the infant’s inner state of dysregulation.

 

PCHA:  How can a parent best support the mental health their infant, child or adolescent living with CHD?

Mr. Wilmot: When I work with caregivers seeking help with their infant, child or adolescent, I conduct a thorough assessment of their situation and take a developmental history through multiple sessions of contact. The issues, strengths and challenges within a family system and within each individual is always unique. That said, I find that a deep need for understanding and a curious attitude is key in parents being able to parent thoughtfully and effectively and enhance their connection with their loved one. I frequently talk with the parents I work with and individuals I present to about building emotional muscle in themselves and facilitating the same in their infant, child or adolescent. Different emotional muscles are called upon at different stages of development for both caregiver and child. One emotional muscle I will provide an example of has to do with naming feelings. There is a saying that “if you name it, you can tame it.” This is important because words are a way of bringing feelings into the mind, in contrast to acting feelings out through the body (e.g., an eating disorder, aggression, self-harm, etc.). Already being such a focus of attention and intervention, the body of a person living with CHD can be vulnerable to being used as an object to store or attempt control of feelings—the body (and physical behavior) becoming a primary way of dealing with intolerable emotions and conflicts rather than through the use of words in relationship. This is where somatization, or the conversion of psychological conflicts can occur into physical symptoms. On more than one occasion, I have seen Facebook posts from worried parents of children with CHD wondering why their child is checking their pulse so much, seemingly worried and appearing anxious. Frequent commentary proceeds with concern about the child’s physical wellbeing, back and forth conversation about the latest appointments and the eventual decision about whether or not to call the doctor. What I would like to posit is that children can also express and signal to us their discomfort with feelings through attention to their body. It is the way so much attention has already been garnered, so what’s a child to do but utilize their behavior and body to attempt communication when words, for one reason or another, are not an adequate channel of communication at the time. The idea that this child may not be trying to communicate a physical problem, but an emotional one merits attention, slowing down and spending some quality time together.

Recently, a parent had asked about when the appropriate time was to start talking about their child’s scar. Common questions revolve around how to talk about CHD at an appropriate developmental level with one’s child or adolescent. As you can imagine, when we don’t know the answer to something we end up left to our own imagination to fill in the blanks. Sometimes the imaginative “filling in” can be more catastrophizing or anxiety-inducing than if a reality-based conversation had taken place to provide information. This occurs with children and adolescents, as well—and many thoughts and fantasies can run wild that create anxiety. Providing education about CHD, making oneself a “safe playground for all feelings” and talking about fears and questions that arise are an integral component of creating the conditions for building emotional muscle.

 

PCHA: When would a parent need to seek professional consultation?

Mr. Wilmot: Parents present for psychotherapeutic consultation for infinite reasons—many times symptoms and problems are in mind, while other times a desire to act preventatively is active. Sometimes the treatment does not result in a need to see the child for quite some time or at all, as parent work becomes a primary focus. Eventually, based on the unique situation presented, I offer impressions and recommendation for individual treatment of the child or adolescent, if appropriate. Additionally, many parents find their own therapy crucial, as it can also help address any “ghosts in the nursery” that may be impinging on their ability to parent and foster progressive psychological development. Unfortunately, stigma around seeking and obtaining mental health services is still present in our society. However, this should not prevent anyone from the care they deserve.

 

PCHA: What can be done throughout the lifespan to minimize the potential for traumatization due to medical intervention and living with CHD?

Mr. Wilmot: That is a good question. As I mentioned previously, thoughts and fantasies in the mind of the child and adolescent can run wild when unknowns and uncertainties exist. This is especially the case when thinking about upcoming doctor appointments, surgeries, concerns and fears about the future and anything with potential to overwhelm or scare. Not talking about these things, hoping for the best and surprising or lying to a child or adolescent with matters concerning their body and health does not bode well. Whether it is preparing a child or adolescent for a routine doctor appointment or a major surgery, there are steps that can be taken to reduce the potential for traumatization. Having time to think about, sit with and explore feelings, thoughts and fantasies through talking, drawing or playing are avenues to accessing the inner world. Sometimes visiting the hospital and touring can be helpful with the ability for the child or adolescent to ask questions and gain a sense of understanding and familiarity. Parents should not be fully burdened by the task of preparing their child or adolescent for surgery, as medical personnel collaboration and engagement is also critical. There is much more to say here, but know that there is always room to reduce potential for trauma no matter the age or circumstance. Professional consultation is warranted.

 

PCHA: What can you say about the siblings of a child or adolescent with CHD?

Mr. Wilmot: I am so glad you asked. You know, the psychological and emotional impact of having a sibling with CHD is getting more coverage. It is an incredibly important topic. Growing up with a sibling with CHD can be traumatic. It also presents challenges in family and sibling dynamics that can be difficult to manage, but are ripe for more emotional muscle building. For example, what is a parent to do with feelings of envy, jealousy, hatred or anger between siblings. One example is in how a sibling may feel envious of the other’s attention received by their CHD, feeling like they are not loved. At the same time, the child with CHD may react aggressively, angered that the sibling is “normal” and can participate in more sports and activities than they can. Resentments and complicated feelings can impinge on individual and family functioning. Ignoring the reality of sibling feelings about CHD is problematic. My experience hearing siblings talk in groups I have led that facilitate the expression of all these varied thoughts and feelings at heart camps has shown that there can be much under the surface that deserves a safe space to come up. Again, professional consultation is just as warranted as for the child or adolescent with CHD.

 

PCHA: What is the matter with transitioning to adult congenital care and how is this a psychological issue, as well?

Mr. Wilmot: Taking responsibility for one’s own body and health is a developmental achievement. As I mentioned before, the dropping out of care of adult CHD patients over time can be related to whether or not one can hold oneself responsible and function autonomously and also how prepared one is in their understanding of their condition. Important relationships exist for many CHD patients from infancy through young adulthood—the pediatric cardiologist, surgeons, nurses, etc. Feelings about these very important people can have significant meaning and must be felt and talked about in order to move forward on an internal, developmental level with regards to transition. Also, parental engagement has been a norm in the maintenance of health with providers—parents as advocates for child and adolescent. Transitioning to adult congenital care can be like going away for college—a time to spread one’s wings and gain competence and mastery with getting to classes on-time and being an independent, capable advocate for oneself. Replace classes with appointments and this can be an example of some transition experiences. There is much to say about transition, but ultimately there is growing awareness that one cannot just be referred out to an adult cardiologist through an abrupt termination in pediatric care because an age limit has been reached and a letter sent out. Feelings, relationships and the process must be respected for a successful transition in care.

 

PCHA: Since you have experience developing programs for CHD camps, what can you say about the CHD camp experience overall?

Mr. Wilmot: CHD camps are special places. As a prerequisite, camps designed for children and adolescents with congenital heart disease are staffed with the necessary medical professionals and oversight to provide a foundation for a safe experience. As is common, camp time includes myriad activities. With a CHD camp, there is cause for additional thinking about the allocation of time. As one camp coordinator for a CHD camp put it, “I feel like we are designing out camp to make sure the kids are ‘entertained’ the entire time and we probably are not allotting enough time for them to really take time to think and reflect with other kids who are similar to themselves.” I believe that it is a concern that often goes overlooked even with the best of intentions. Without giving the space needed to slow down and have time with feelings, we would be propagating a message that scary things cannot be talked about, at the one time each year that CHD kids can come together. The same camp coordinator continued with, “I feel like we, as the people putting camp together, are afraid to venture out and do something we aren’t familiar with and don’t really know how to pull it off (and I for sure put myself into that).” I think this is very helpful to acknowledge and think through. To not dedicate time to what is going on inside is like telling a child to come play with other kids who have gone through and live with things like you (some scary), but we are not going to talk about how any of that feels to you.

 

For some, going to camp is an emotional confrontation, and for others going to camp is an integrated experience that offers an opportunity for connection and a chance to feel more understood. In both cases, there are feelings ripe for expression via art, writing, talking and other play within the safe container of a professionally facilitated psychotherapeutic group. Ways of connecting that are accessible to both the extroverted and introverted child can help to reach each camper’s inner world. A psychotherapeutic group experience can provide a space for “big feelings” to become more understood and help the child or adolescent living with CHD come to a new level of mastery of their own feelings, building fundamental emotional muscle. Camp offers a unique time and place to touch on the emotional needs of each camper with each of their separate, yet connected experiences living with CHD. In my consultation work with CHD camps, I advocate for the time needed to directly intervene on these emotional levels.

 

PCHA: What are your thoughts on current research trends regarding CHD and mental health?

 

Mr. Wilmot: A recent article I corresponded on put forth a conclusion that quality of life was very positive for CHD children and adolescents. There was not a mention of trauma in the article and the results were based solely on self-report by children and adolescents. Let me start by saying that the need for this kind of research is huge. However, what I want to also say is that the use of self-report for research purposes has serious limitations. Children and adolescents may not feel safe to answer truthfully (“What if mom and dad see, and they think I need to go to another doctor?”) or questions may be too standardized to truly assess the full psychosocial circumstance. Other issues exist with self-report, as well. Individualized inquiry through interviews with mental health professionals over time, I think, is a better framework for obtaining in-depth information about the quality of one’s life and state of mental health. Quantitative assessment alone misses data, especially since we are creatives of narrative with complex inner-workings. The interviews can also gain a more comprehensive evaluation of issues (e.g., asking about body image, physical attractiveness concepts, etc.) in other domains not asked about on the brief self-report instrument that would also impact quality of life. More research is needed on the intersection of mental health with the CHD population—quality over quantity, in my opinion.

 

 

PCHA: Mr. Wilmot, we appreciate your time. Thank you for answering these crucial questions. I think you have shed a light on many important issues to the CHD community.

 

Mr. Wilmot: Thank you.

 

Austin E. Wilmot, M.S.W., L.C.S.W., a national expert in the treatment of children, adolescents and adults living with congenital heart disease, is a child and adult psychotherapist and consultant in clinical practice in St. Louis, Missouri. Mr. Wilmot earned his Master of SocialWork from the George Warren Brown School of Social Work at Washington University in St. Louis, and completed post-graduate training at the St. Louis Psychoanalytic Institute. He is also a consulting psychotherapist for the Washington University School of Medicine Adult Congenital Heart Disease Center. Mr. Wilmot has worked with parents, families, children, adolescents, adults and professionals within the congenital heart disease (CHD) community. He also has experience consulting with CHD camps and developing programs that address the unique needs of children and adolescents living with CHD. He is active on the local and national level through speaking, teaching and consulting. He frequently presents on the topic of medical trauma and other mental health issues—his upcoming seminar for professionals, “When helpers hurt: Understanding and working with medical trauma”, is scheduled for October 2017 in St. Louis, MO. More information about Mr. Wilmot’s practice, including his contact information, can be found at heartchd.com and austinwilmot.com.

Making sense of congenital heart surgery data

The Pediatric Congenital Heart Association is committed to empowering patients and families. Patients and families deserve essential information to help make important health care decisions. As this data becomes available it can be very hard to understand.  It is our hope that this resource can help.  For a .pdf version of this document, click here.

When your child has congenital heart disease, at times it can feel like there are so many decisions to make, especially, when faced with surgery or another medical procedure.  During these times of stress, it is important to partner with your child’s medical team.

One key decision you may be thinking about is where your child receives care. More and more information about different hospitals is now available to the public for you to review.  However, understanding this information can be a challenge.

Much of the information to look at includes several different numbers.  Our goal is to describe what some of these numbers mean, offer things to think about when reviewing this information, and encourage you to use publicly available data as “one piece of the puzzle” when making health care decisions.

Above all, please use this information in a conversation with your child’s medical team when making important decisions.

 

A little bit of background

Understanding congenital heart surgery information that is available to the public can be very complicated, even for people who work with the numbers all the time.  We realize you may find that some of this information is difficult to understand.  It is important information and we encourage you to talk with your child’s medical team to help you.

Here, we are going to focus on explaining one specific set of information reported by the Society of Thoracic Surgeons (STS). Of all programs involved in reporting congenital heart surgery information to the public, the STS program is currently the largest.  The information from the STS is also used by other groups who report congenital heart surgery data to the public, including Consumer Reports and US News & World Report.

The STS routinely collects multiple pieces of information about congenital heart surgery to form a database.  This information is often called “data” and includes a variety of different numbers along with other information.

Approximately 120 hospitals around the country who perform congenital heart surgery provide information to the STS database. In 2015, the STS began sharing some of this information on their website for those hospitals that agreed to share their information with the public.

The reporting website can be found at:  http://publicreporting.sts.org/chsd.  This information is updated once a year.  Details from the STS about the information contained on the website can be found here.

 

The STS data

The STS reporting website lists several pieces of information for each hospital participating in public reporting. As you read on, we’ve tried to help you understand what some of the words and numbers mean that you will find on the website. Some of this information may be easy to recognize and understand.  Some of it is more complicated.

In addition to the information below, we have also developed an appendix that can be used with this guide that may provide additional helpful information.

 

Surgeons

The name of each surgeon at the hospital who performs congenital heart surgery was listed on previous versions of the STS website, but is not listed in the current version.  There is a link to the hospital’s website where you may find some of this information.  You may also want to inquire about the surgeon’s board certification and level of experience.  In addition, it is important to remember that the care of patients with congenital heart disease involves multiple team members working together including the surgeon. You can use our guided questions tool as a reference for other questions you may want to ask about the care team.

 

Outcomes

Outcome means the result of the surgery.  For each hospital, information is displayed on deaths after surgery.  These include all deaths that occur during the hospitalization in which the surgery is performed, or death that occurs in any location within 30 days of surgery. All deaths are included – the cause doesn’t matter. Each hospital uses the same criteria, which means they cannot pick and choose which deaths to report.  The STS periodically checks the information to make sure they are not missing any deaths; about 10% of the hospitals participating in the STS Congenital Heart Surgery Database are randomly selected each year to have their data checked or audited.

The STS is also working on developing methods to report other types of important outcomes such as complications after surgery, and the number of days a child stays in the hospital after surgery.

 

Timeframe

The information is gathered about all surgeries that took place at a hospital during a span of the last four years.  Although you may want to see only the most recent numbers, like over the past month or past year, this can have some downsides. Because only a small number of surgeries may be performed over a short period of time by any one hospital, comparing these small numbers may make it seem like there are no real differences. Research studies have shown that putting the numbers together into 4-year timeframes gives the best chance that any differences will become easier to see.

You may want to ask whether the hospital you are considering has had any major changes recently (like changes in surgeons, cardiologists, the unit patients are treated in, etc.), and if so, work with your child’s healthcare provider to understand some of their most recent data.

 

Data Presentation

The information is presented in two ways on the website:

  1. Overall: Overall numbers for all of the congenital heart surgeries.
  2. Separate STAT Categories:  Separated into categories of surgeries as described below.

 

STAT categories

It would be great if the outcome information we are talking about were reported for each specific heart defect or type of surgery, but this can be challenging.  Because there are so many kinds of heart defects, a hospital may not see many of the exact same type of defects in a given year. These small numbers can be hard to understand or compare as described in the section above.  Combining operations together into larger groups or categories (the STAT categories) can help.

To help organize surgeries into categories based on how risky or complex they are, the STS places each surgery type into one of five “STAT” categories. Category 1 includes surgeries with the lowest risk of death, and category 5 includes the surgeries with the highest risk of death. STAT is short for:  Society of Thoracic Surgeons – European Association for Cardio-Thoracic Surgery. These categories were created after looking at 77,294 heart surgeries across North America and Europe.

A brief listing of common types of surgeries included in each STAT category is included in the table below.  More detail can be found in this article:  O’Brien SM, Clarke DR, Jacobs JP, Jacobs ML, et al. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg. 2009;138:1139-53.

 

Common types of surgery within each STAT Category
STAT Category 1 atrial septal defect repair, ventricular septal defect repair, coarctation repair, subaortic stenosis resection, pulmonary valve replacement, conduit replacement
STAT Category 2 Tetralogy of Fallot repair, Fontan operation, Ross operation
STAT Category 3 Hemi-fontan operation, arterial switch operation, complete atrioventricular septal defect repair
STAT Category 4 aortic arch repair, arterial switch operation with ventricular septal defect closure, heart transplant, aorto-pulmonary shunt, total anomalous pulmonary venous return repair, truncus arteriosus repair
STAT Category 5 Norwood (stage I) operation, hybrid stage 1 procedure, double switch operation, truncus arteriosus with interrupted aortic arch repair

 

Mortality Data

Let’s take a look at how the information about death (mortality) is displayed on the STS website:

#/Eligible and Observed:

The first column of numbers on the website shows the following numbers for each hospital:

# – total number of deaths during the 4-year timeframe.

Eligible – total number of surgeries performed during the same timeframe.

This number is particularly important because it tells us the volume or number of surgeries the hospital performs.  See below and the appendix for more information about how to understand this information and why the volume of surgeries a hospital performs is an important piece of information to consider in addition to the number of deaths or mortalities.

Observed – the rate of death calculated by dividing the two numbers above:  the number of deaths divided by the total number of eligible surgeries.

Even though the numbers in this calculation are pretty easy to understand, they should not be used to label the quality of a congenital heart hospital. This is because the types of congenital heart disease and surgeries performed, along with important characteristics of the patients (such as whether they were born prematurely or have some type of genetic syndrome or other medical problem besides their heart disease) can be very different across hospitals. Some hospitals treat a lot of patients with very complex or severe heart disease and other conditions, while other hospitals treat fewer of these patients.  This is known as having a different “case mix”. If you compared only the simple calculations above, some hospitals could have a higher rate of death just because they take care of more complicated and complex patients, not because they are providing lower quality or worse care.

So, in order to better understand how a hospital is doing, more advanced methods are necessary.

 

Expected: 

This column lists the expected rate of death.

This number is calculated from a math formula that is used to predict how many deaths we could expect to see at a hospital when taking into account the severity or complexity of patients they treat. This formula uses information like the type and complexity of the congenital heart surgery performed, and the characteristics of the patient such as how old they are, how much they weigh at the time of surgery, whether the patient has a genetic syndrome or other medical problems, etc.

Importantly, hospitals don’t get to pick their own expected rate, it is assigned for all hospitals based on the information in the math formula created by STS.

The formula is not perfect. It does not take into account every important factor that relates to how complex or sick a child may be at the time of surgery, but it is the best one that has been developed to date and it has been improved and updated over time.

 

O/E (95% CI):

This column lists what is known as an observed/expected (O/E) ratio and a 95% confidence interval.

Observed/Expected (O/E) ratio – This ratio is calculated by using the data described above, and dividing the number of observed or actual deaths at the hospital by the number of expected deaths from the math formula (based on how complex or sick the patients at that hospital are).

If the O/E is 1 – A ratio of 1 means the hospital has a similar number of deaths to what would be expected for the type and complexity of patients that they treat (their case mix)

If the O/E is less than 1 – A ratio less than 1 means the hospital had fewer deaths than what would be expected for the type and complexity of the patients that they treat. Thus, a lower O/E ratio is better.

If the O/E is greater than 1 – A ratio greater than 1 means a hospital has more deaths than what would be expected for the type and complexity of the patients that they treat.

95% Confidence Interval (95%) – The O/E ratio is displayed with what is known as a 95% confidence interval, which is very important. The calculations from the math formulas described above are complicated, and it is difficult to be completely certain about what the exact O/E ratio is. The confidence interval shows the range of numbers where the O/E ratio could fall for each hospital. This range is just as important as the O/E value itself.  Taken together, the O/E ratio and 95% confidence interval is believed to be one of the most important pieces of information displayed on the website.

 

Adj. Rate (95% CI):

This piece of information can be challenging to interpret.  It represents the adjusted mortality rate with 95% confidence interval.  It is calculated from a math equation using some of the information described in more detail above.  It represents what the hospital’s rate of death would be if their results were in theory applied across the entire population of patients within the STS Congenital Heart Surgery Database.

 

Star rating

In an effort to help make it easier to understand the information we’ve been talking about, STS has given each hospital a star rating ranging from one to three stars. This rating is based on the O/E ratio and 95% confidence interval.

One star = More deaths than expected.  These hospitals have more deaths than would be expected based on the type and complexity of patients they treat (their case mix).  Their O/E ratio and entire 95% confidence interval are greater than 1.

Two star = Deaths similar to expected. These hospitals have a rate of death similar to what would be expected based for the type and complexity of patients they treat. Their O/E and 95% confidence interval overlaps with 1.

Three star = Fewer deaths than expected.  These hospitals have fewer deaths than would be expected for the type and complexity of patients they treat. Their O/E ratio and entire 95% confidence interval are less than 1.

Example –

Star rating                   Example of O/E ratio (95% CI)

1 star                                       1.4 (1.1 – 1.6)

2 star                                       0.8 (0.7 – 1.1)

3 star                                       0.6 (0.5 – 0.9)

 

It is important to note that based on the definitions of the star categories described above and the way the math formulas work, the vast majority of hospitals fall into the two star category. This is talked about in more detail below.

 

What does all of this mean?

This information can be hard for families and even providers to understand. There are a few key points to be aware of:

  • Not all hospitals share their data. Of the hospitals currently participating in the STS Congenital Heart Surgery Database, about half currently agree to share their information on the STS public reporting site (see the appendix for more details). If you are considering a hospital that does not report their information you should ask them why. They likely still send their data to the STS Database, but have decided to not share it publicly. You can work with your child’s medical team to ask for the same information that would be posted to the STS website.

 

  • Remember the timeframe of reporting. As described above, there are several reasons why the 4-year timeframe for reporting the information was chosen. You may want to ask whether the hospital you are considering has had any major changes recently, and if so, work with your child’s healthcare provider to understand some of their most recent data.

 

  • Not all outcomes are reported. Current public reporting efforts focus on mortality (death) that occurs in the short-term after surgery. Efforts are ongoing to develop the methods necessary to share information on complications that occur after surgery, number of days in the hospital, and other longer-term outcomes. In the meantime, you should talk about other outcomes that are important to you with your child’s healthcare team and work with them to understand any available information.

 

  • The raw numbers may be easier to understand but they SHOULD NOT be used to judge the quality of a congenital heart hospital. The raw data (#/Eligible and Observed) do not consider the severity or complexity of patients the hospital treats. Some hospitals may have higher mortality rates simply because they take care of sicker or more complex children.

 

  • Use the information that takes into account the type and complexity of patients the hospital treats. The additional information calculated from the math formulas described above is much better to use in understanding how a hospital is performing compared to what would be expected for the type and complexity of patients that they treat. The math formulas allow the calculation of the O/E ratios and star ratings.

 

  • Look beyond the star ratings. There are a few things to know about the star ratings calculated from the math formulas:

Small changes can influence a hospital’s star rating. Any time you group hospitals into categories, a few more or less deaths can cause the hospital to change from one category or group to another. The same is true for the star rating system.  For example, in one reporting period a hospital had an observed mortality rate of 3.7% with an O/E ratio of 0.84 (95% confidence interval 0.66-1.05) resulting in classification as a 2-star center. The year prior, the observed mortality rate was 3.8% with an O/E ratio of 0.8 (95% confidence interval 0.6-0.9) resulting in classification as a 3-star center.

The majority of hospitals are classified in the 2-star category. Because of the way the math formulas used to calculate the star rating work, the majority of hospitals are classified within the 2-star category. There may be important differences between some of these hospitals that you don’t see when you look only at the star ratings.

Use the more detailed information on the STS website. Due to the reasons above it is important to look beyond the star rating to more of the detailed information presented on the STS website. Remember that lower O/E ratios are better, but also that small differences in the O/E ratios themselves may not be important. The confidence intervals around the O/E ratio are just as important to consider because they describe the range of values where the O/E ratio is likely to fall.

 

  • The information on the website can’t necessarily be used to directly compare two hospitals without knowing more of the story. This point is critical to understand.  The math formulas used to calculate the information such as the O/E ratio and star ratings tell us how a hospital is performing compared to what would be expected specifically for the type and complexity of patients they treat (case mix).

 

For example, a hospital can receive a 3-star rating by doing well in caring for a high-complexity patient population (very sick/complex patients), doing well in caring for a low-complexity patient population, or somewhere in between.

A hospital who does well in treating lower complexity patients can’t really be directly compared to a hospital who treats higher complexity patients (sicker or more complex children). It can’t be assumed that this first hospital would have the same success if they were treating the more complex or sicker patients that the second hospital treats.

For this reason, it is important to understand not just the information about the outcomes (the O/E ratios, star ratings, etc.) but also the type and complexity of the patients that the hospital treats in order to make the best judgement.

This is really important especially when deciding where to seek care for a child with more complex heart disease. In this situation, you may want to understand not only which hospitals have good results but whether they achieved these results through taking care of a high complexity patient population. 

 

  • Understanding the type and complexity of patients a hospital treats. So how do you understand this important piece of the information – the type of patients that a hospital treats? There is no “gold standard” or best way to do this that has been looked at in any research studies to date, and it can be challenging to understand based on the data currently presented on the website.  Here is one way to begin to understand this information:

You can look at the number or volume of patients a hospital treats in the high complexity or high risk STAT categories (STAT categories 4 and 5). Remember this information is found under the “Eligible” column described above. A higher number means the hospital treats more of these types of cases.  You can also understand a hospital’s results or mortality information (O/E ratio and 95% confidence interval) specifically for these higher complexity operations by looking at the information presented in these rows of the table for each hospital on the STS website.

 

In addition to helping to put the information above, such as star ratings, in better context, it is also important to note that prior research studies have shown that in general that hospitals that perform a higher number of operations generally have better results, particularly for children who have higher complexity types of heart disease. This is known as the “volume-outcome” relationship.

 

  • More information, including the range of values from hospitals currently reporting on the STS website, can be found in the appendix.

 

How can I use this data?

Publicly reported information can be a useful tool when making health care decisions. However, it is important to remember that the information shared, as well as this guide, cannot by itself tell families where they should seek care for their child.

There are often many things that impact a family’s healthcare decisions and this information is best used as just one tool to help to make those decisions.

We recommend reviewing the publicly reported STS data and the key points included in this guide with your child’s healthcare team as a first step.  Don’t be afraid to ask questions until you understand how this information impacts your child.

For more information, visit www.conqueringchd.org.

 

Authors:

Sara K. Pasquali MD MHS1, Jeffrey P. Jacobs MD2, Michael Kim PhD3, Amy Basken MS4

1 University of Michigan, C.S. Mott Children’s Hospital, PCHA Medical Advisory Board, 2 Johns Hopkins University, Johns Hopkins All Children’s Hospital, PCHA Medical Advisory Board, 3 Parent, PCHA Steering Committee, 4 Parent, PCHA Director of Programs

Acknowledgements:

PCHA would also like to thank editors David Kasnicand Nicolas Madsen MD MPH2

1Parent, PCHA Executive Director; 2Cincinnati Children’s Hospital and Medical Center, PCHA Medical Advisory Board Vice-Chair

 

Back to School Q&A Panel

This August, PCHA has been celebrating the start of the 2017-2018 school year with our Back-to-School series. For our  final post  this month, we’re sharing an encore presentation of the Back to School Q&A Panel. Three people, within the CHD community, share their perspective on how CHD affects kids differently during this exciting time of year.

 

 

 

 

 

 

Congratulations on the start of a new school year! Please introduce yourself. What grade will you or your child be entering?

Frances: My name is Frances and I volunteer as the blog coordinator for PCHA. My husband and I live in California and have a confidant and outgoing 3-year old daughter who was born with severe mitral valve prolapse and a VSD. She had a very successful open heart surgery at 8 months old. She’ll be starting a couple mornings of preschool this year.

Margaret: Hi! My name is Margaret and I’m a heart mom to an awesome 8-year old heart hero named Kieran who will be starting 2nd grade. We’ve been through Birth to 3, as well as the IEP and 504 Plan process. I am also a parent adviser to our local hospital’s School Intervention Program.

Jack: Hello, my name is Jack Radandt and I was born April 15th, 2001, with Hypoplastic Left Heart Syndrome (HLHS). I had three open heart surgeries by the age of three, Norwood, Glenn, and Fontan. I lived a pretty normal life after my Fontan surgery. I was able to attend school, and even keep up with the other kids my age. At age eleven I experienced heart failure. I went to Children’s Hospital of Wisconsin in Milwaukee and was placed on the transplant list in October of 2012. I then needed to be on a device to bridge me to transplant. In December of 2012, I had surgery for a device called Heartware Ventricular Assist Device or (HVAD). I was the first single ventricle child in the United States to have the device and second in the world. I was also the first single ventricle child in the world to go home on this device. I had the HVAD for five months, until I received a heart transplant on May 20th, 2013.

What are you or is your child looking forward to most this school year?

Jack: I am looking forward to all the speaking events that I was able to get this school year.

Margaret: Kieran says, “gym!”

Frances: Making new friends. She has the ability to make a friend wherever we go, even when we run errands!

Do you notify your or your child’s school or teacher about your or your child’s heart condition? If so, how do you go about doing so?

Margaret: We definitely do. I’ve learned that teachers and school staff really appreciate being informed. Not every CHD student will need an IEP or a 504 plan, but we have both. Each teacher gets documentation about his HLHS, health, and classroom needs. Each year, I’ve met with school staff before school starts to make sure we’re all on the same page and to answer any questions. He has an excellent team at school that is communicative and proactive. We don’t just think about the regular classroom teacher — it is important to have a plan in place so that the school nurse, office staff, lunch and recess supervisors, gym teacher, substitute teachers, and any other school professional who might work with Kieran be informed of his health plan.

Jack: I do notify my school’s faculty, staff, and students of my condition, and I am very open about my scar and surgeries.

Frances: When filling out her general medical information for the preschool, we noted her cardiologist in addition to her pediatrician. She also has a medical device identification card for her annuloplasty ring in case any emergency arises affecting her heart. While our daughter has zero restrictions and no known issues otherwise, we included a copy of this card for the preschool and let the director know about it as a precaution.

Do you or your child have any limitations or require medication during school? If so, how do you handle this?

Margaret: Kieran has HLHS, and his cardiologist has requested that he stay indoors when it is below freezing. On these days, he gets to pick a classmate to stay inside and play board games with. He also has an adaptive PhyEd teacher working with him in gym class. He has a water bottle with him all day to prevent dehydration. For fire drills, he has instructions in his health plan to be allowed to wear a coat outside if it’s cold out. There are certain things we take on a case-by-case basis, such as field trips and walking trips.

Frances: Our daughter doesn’t have any limitations or medications, though the future is uncertain. Her heart will need to be monitored more closely during puberty as her device may be affected during this exponential growth period.

Jack: I don’t have to deal with this because I take my medication right before I go to school and right before I go to bed.

What reaction do you get from the staff if you notify them? Do you feel this affects how the teacher and/or staff interacts with you or your child?

Frances: They thanked me for sharing the information. They haven’t mentioned it otherwise, and from what I’ve seen do not give her any special treatment.

Margaret: We’re fortunate to have a neighborhood school that fosters a very positive learning environment for everyone, and is innovative about classroom adaptations. When we’ve notified them, they’ve responded very positively with a can-do attitude. Last year at our back-to-school meeting, not only did Kieran’s new teacher attended, but the office staff, principal, school nurse, and almost everyone involved with his IEP. Shedding light on the HLHS and the secondary challenges we’ve faced helps them understand how to meet Kieran’s needs better, as well as helps them understand why he (and we as parents) sometimes act the way we do.

Jack: Some of the faculty and staff that find out about my condition feel very uncomfortable about the whole situation.

How open are you or is your child about CHD with peers at school? How does this affect your or your child’s relationships?

Jack: I am very open about my condition. This is my life and I’m not ashamed of it at all.

Frances: Since she’s still very young, our daughter doesn’t make a point to either hide or reveal it. While I want her to be proud of her scar, I also want to allow her to talk about CHD on her own terms whether that’s mentioning it to close friends or being a vocal advocate. She is a naturally confidant and extroverted individual, so it doesn’t seem to bother her when someone points it out or asks. For now we focus on making sure she knows her scar is something good and how to respond in situations. I don’t make any consideration with clothing when it comes to her scar, choosing her outfits based on the weather and her own personal preferences.

Margaret: Kieran is very sensitive about his heart condition. We don’t actively keep it a secret, but we don’t actively volunteer information about it to his peers, either. He feels very strongly that he is a “normal” child and wants to be seen that way. Everyone is different, and I know many heart parents who believe it’s important for their child to be CHD advocates, but I feel it’s important for now for him to feel comfortable at school and have it be a “safe space” for him to feel normal. He sometimes does participate in CHD activities with me outside of school, but he doesn’t understand why they’re important. He sees his “heart friends” as regular friends. Many heart kids don’t truly know the gravity of some of their heart defects until they are much older. A cause that affects him much more, and has for years, is hunger and his desire to see everyone in the world have enough food to eat. I think that’s wonderful. We should all be able to focus on areas of need that spark our sense of fairness.

What is your or your child’s favorite subject or activity?

Frances: She loves the arts – dancing, painting and music.

Jack: My favorite subject in school is biology.

Margaret: Definitely gym. He also likes math and music.

What, if any, concerns do you or your child have in regards to CHD for the school year?

Margaret: My biggest concern is that somewhere, at some point, there might be a breakdown in coordination at school. I worry most when there is a substitute teacher in the classroom, because I’m not informed of it, and I have no idea if they’ve read his 504 plan and understand it. Luckily, he comes into contact with many staff throughout the school day, and I think they all do a good job keeping an eye on him and all the students. Sometimes, because he wants to be seen as “normal” in front of his peers, he’s not as assertive as he should be. I also worry about rough play during recess. This has been a problem at times throughout the past school years, where he will be tackled or otherwise roughed up during normal play, which has resulted in some bruising because he is on blood thinners.

Frances: You would have no idea our daughter has CHD besides her scar, so my only concern is her peers setting her apart in a negative way because of it. Her preschool focuses very much on emotional competence and socialization in a play based setting, and what we liked most about it when touring was how respectful every child was to each other regardless of their differences.

Jack: I am in a very small school so I really have no concerns besides being ill.

If you or your child has a high sensitivity to illness due to CHD, how do you or your child combat this at school?

Frances: While she doesn’t have a high sensitivity, her pediatrician still errs on the side of caution by making sure she gets the first flu vaccination that comes in for the season which we are thankful for. We also chose a preschool with a smaller class size and a strong emphasis on cleanliness.

Jack: I am sick a lot so missing school is always a big concern.

Margaret: The school nurse, or sometimes the classroom teacher, is really great about informing us about illness at school. They will email us personally if a lot of kids are out sick, or with certain communicable illnesses requiring all parents at school to be notified, the school nurse sends home flyers. We are most concerned about things like strep and seasonal flu. If it’s an outbreak the classroom, we would most likely keep him home until it had passed. We use hand sanitizer, get a flu shot, and try to get enough sleep and eat healthy. We emphasize to Kieran the importance of good hygiene. His school has a great custodian and they are good about keeping the classroom and school wiped down.

What is your biggest hope for yourself or your child this school year?

Jack: To remain on honor role and avoid illnesses.

Margaret: That he will make more friends and feel more included socially. Not only is he an only child, but like many CHD kids, especially those with critical heart defects, he is a bit behind for his age socially. Add to that the fact that he easily tires during playground games and has to take breaks during physical activities, he sometimes feels frustrated that he can’t keep up with other kids, especially most of the boys. Of course, I also hope he has a great learning experience this year and finds areas of learning he really loves.

Frances: I hope she will be able to make new friendships and start a solid foundation of a love for learning!

What area(s) is your child most successful at school?

Frances: Since day one, my husband and I have never experienced separation issues with her. She’s very adaptable, confidant and according to her preschool teacher, not at all afraid to ask questions.

Margaret: He a wonderful singer, and is also very creative when it comes to visual art. Last year, he did after school Spanish and book club, which was good for him. He is successful at reading, although he pretends to think it’s “boring.”

Jack: Science class over any other classes.

Thank you all for joining us this past month thoughout the Back to School Series, and best wishes for the new school year! 

Happy Birthday PCHA – #ConqueringCHD Week!

Here are a few ways to

celebrate our 4th Birthday with us!


Use your Social Media talents as we work to reach 450,000 people and get 15,000 page likes!

It’s your week to shine as a PCHA #ConqueringCHD social media ambassador!

In February, our education efforts had a total weekly reach of 344,000 people for our #CHDAware campaign.  Wow – that is more than double the previous year’s CHD week!  That is a huge impact!

We’re also currently at 14,798 likes on our facebook page and we would love to get 15,000 followers by the end of the week!

Join the Social Media Blitz 

During this help us cover social media with facts and faces. Like, share, comment and tag using the hashtag #ConqueringCHD.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes throughout the week.

Make it personal – Using the hashtag #ConqueringCHD, share stories and photos about those in your lives who are Conquering CHD. Tag us on Facebook, Twitter or Instagram. Whether it is conquering CHD at the doctors office, at school, on the playing field, welcoming a rainbow baby, helping others, advocating, or celebrating a birthday of your own, during #ConqueringCHD week, we want to celebrate with you!!

Invite others – we can do the work for you – simply guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button iglogocolor

Write your Members of Congress

Tell them it is #ConqueringCHD Week.  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


Gear Up!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and more!  Don’t miss our great strawberry smelling pens, too!! 

 


Attend an Event

The party goes on after #ConqueringCHD Week.  Consider joining us for one of our great Congenital Heart Galas:

Third Annual Congenital Heart Gala on September 16th, 2017 at the Milwaukee Art Museum, Milwaukee Wisconsin.

Inaugural Congenital Heart Gala on September 9th, 2017 at the Four Seasons Downtown, Denver, Colorado.

And check out events happening in your area by connecting with one of our local state chapters HERE:


Finally, Celebrate all you are doing as, together, we are #ConqueringCHD!

School Intervention Series: Advocating for a Program

In her final post of a three-part series, Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin, details how to start advocating for a dedicated school liaison at your cardiac center. If you missed the series, you can find her first post here and Complete Resource Guide here.

 

 

 

Advocating for equal accesses to quality education for children with complex health needs is often a difficult process. At times, the numerous boundaries families face seem to make it almost impossible to get appropriate evaluations and support services in place, especially within schools. It is in the untangling of these messy webs of communication and information where I find some of my most fulfilling work. Having a dedicated school liaison position within your cardiac center (usually as part of a multidisciplinary neurodevelopmental follow-up team) is an ideal situation for receiving whole-child focused, comprehensive care; however, there are many ways for parents to step in and be the driving force in centers that have not yet established these types of innovative programs.

Understanding Neuropsychology

Neuropsychology is the study of the relationship between the brain and behavior. During a neurodevelopmental evaluation a child’s level of cognition and intellectual functioning, emotional and behavioral functioning, and social functioning are assessed. Each assessment will track milestone progress in areas such as: motor skills, play skills, feeding, language development, growth, nutrition, and hearing. The goals of this type of assessment are to identify the child’s ability to function in a group of same-age peers, identify the factors that influence their actions and reactions, determine how levels of functioning  are influenced across different medical treatment/intervention stages, determine the response to or recovery from specific treatments, monitor overall brain development, and provide recommendations for schools in effort to implement appropriate special education services and other learning supports. A neuropsychological evaluation is typically recommended for children between the ages of 6 month to 18 years, who are at high risk for developmental disorders, disabilities, or differences. While the child’s age determines the way they are evaluated, this assessment usually consists of formal pencil-paper testing and interactive completion tasks such as match-making, completing patterns or sequences, and following oral directions. In addition, the neuropsychologist/psychologist will review psychosocial family factors, as well as the child’s developmental and medical history.

The Benefits of a Cardiac Neurodevelopmental Follow-up Program

Children with congenital heart disease are considered high-risk for developmental differences and delays due to many factors related to their medical history, including medication, treatments, and surgical repairs. Fortunately, research also shows that with early identification of these learning delays and appropriate follow-up services put in place, these children can go on to lives long and successful lives.

Neurodevelopmental follow-up programs are designed around a multidisciplinary team of experts who conduct regular, comprehensive assessments of a child’s growth and progress in all areas of functioning and development (also called “neurodevelopment”), and provide families with important information, recommendations, and resources needed to ensure the best possible educational outcomes.  There are several school-age transition points that tend to show an increase of challenges (for example: 3rd grade is a time when children become more independent at school, thus learning difficulties become more evident; the transition from 5th to 6th grade requires a shift in complex problem-solving and organizational skills, and so on). Ongoing neurodevelopmental evaluation is recommended as it is typical for new concerns to arise at different developmental stages.

Once a neurodevelopmental evaluation has been conducted, families will have a better understanding of their child’s overall level of functioning and specific cognitive strengths and weaknesses. Recommendations may be given for academic assistance in terms of accommodation or modification in school or for further psychological or psychiatric therapies/treatments/evaluations. Recommendations may also include planning for transitional service from pediatric to adult care. Most evaluations will also conclude with recommendations for continued skill development at home, ideas for discipline and/or behavior management, and additional resources for support.

Advocating for Neurodevelopmental Follow-up, School Intervention, and Like-programs

I always recommend that my families educate themselves on the developmental milestones of “typically developing” children. I whole-heartedly believe that all children are different and hit “normal” milestones at all different times, but early identification of differences or delays (even if it’s just scheduling an assessment or evaluation) overwhelmingly leads to higher overall academic success rates.

Once you’ve noticed a concern it is important to talk to your child’s primary care provider (general pediatrician) or cardiologist right away. These medical providers will be able to listen to your concerns and help identify action steps (i.e. request an Individualized Education Plan, set up a Neurodvelopmental follow-up, etc). In the event that your cardiac center does not have formal programs in place to assess and assist with neurodevelopmental and educational challenges, there are still ways to seek necessary support. For example, most cardiac programs have a dedicated social worker. A family might request to work with a social worker to express school concerns and connect with existing resources or school support services found within the community. The social worker might be able to schedule a meeting with a hospital-based psychologist or child life specialist who can further assist if your cardiac center does not have these as dedicated cardiac positions.

Parents as Advocates

Parents are often the strongest driving force behind hospital innovation. If your cardiac program does not have access to neurodevelopmental or school support services, you should be asking the question, “why not?” I encourage families to ask their providers, “where do you send your patients for neurodevelopmental follow-up?” (as opposed to the question, “do you offer any neurodevelopmental follow-up?”) and push them to make those hospital-based and community connections to complete their child’s medical team needs. Stay vocal and active in this movement to make neurodevelopmental follow-up and school liaison services part of the expected standard of pediatric healthcare, specifically in the area of cardiology, where this type of comprehensive medical follow-up program is still very new.

Wan tot learn more about the Herma Heart Center’s Neurodevelopmental Follow-up Program? Visit http://www.chw.org/medical-care/herma-heart-center/programs/developmental-follow-up-program/

Want to learn more about the Herma Heart Center’s School Intervention Program? Visit http://www.chw.org/medical-care/herma-heart-center/programs/school-intervention-program/


Kyle Herma

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

School Intervention Series: A Complete Resource Guide

PCHA welcomes back Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin School for part 2 of her 3 part series about School Intervention. If you missed her first post, you can find it here. Today, we re-share Kyle’s wealth of information on navigating a school’s system without a dedicated school liaison. Her complete resource list is included at the end of this post for easy reference. 

Going back to school after a diagnosis or hospitalization can be scary for everyone! Families might worry about how their child will transition, schools might worry about how they will care for the child, and children might worry about what to say and how to act around friends they haven’t seen in a while (just to name a few examples). Each and every one of these concerns is valid and understandable. So, how do we swing that pendulum of emotion from feeling anxious to feeling prepared? I like to think of it as a 3-step process: proactive planning, clear communication, and seeking appropriate supports. The goal for this second part of my series is to give you a variety of resources, tips, tricks, and recommendations to successfully accomplish all three.

Proactive Planning

School is one of the best distractions a child can have! School provides a predictable structure with scheduled events, activities, responsibilities, and expectations. These are all things that will greatly benefit children who have experienced significant unpredictability in their lives. Yet, we know that return to routine can be overwhelming at times. The Center for Children with Special Needs and Seattle Children’s partnered up to create a great checklist for planning your child’s return to school. You can find that checklist here.

When I meet with families who are preparing for a new school year I always share two “Back-to-School” information sheets. Battling the Back-to-School Butterflies helps families plan for the big day by suggesting some tips for easing back into a school routine and Back-to-School To Do’s is a list of compiled questions to ask yourself while planning for an organized transition back to school. Thinking points, if you will!

Attendance is another major topic that comes up when I am working with families on school re-integration. We all know that children with chronic illness (regardless of the type) miss school more frequently than their healthy peers. Since the attendance patterns children form in school are closely linked to their ability to successfully maintain a job as an adult, I always stress attempting to make medical appointments before or after school, and if this is not possible, to work with your child’s teacher to find a time where the least core curriculum will be missed. Remember, missing a class period does not just mean you are missing the information covered in the textbook, it also means you are missing explanations, examples, peer questions, opportunities to practice and share reasoning’s, etc. – things that cannot be replicated when completing the make-up assignment at home. Proactive Planning for Necessary Absences is the info sheet that I often share with families as they create a plan that seeks to accommodate both a busy appointment schedule and optimum school attendance. It won’t always work out perfectly and that’s OK – your child’s health comes first! I just want it to be something that’s considered along the way.

Clear and Consistent Communication

Sharing information about your child’s medical history, current medical status, or potential medical challenges in the future can be really hard and often emotional. Schools understand that. They don’t want to know all of your child’s medical history to be nosey; they need to know it so they can ensure they are providing the best and safest care. It is within those uncomfortable conversations that trusting relationships are built – it’s OK to be vulnerable and it’s OK to not know all the answers. Use this opportunity to work together to find them. Ten Tips for Caregivers is an excellent starting point for quick tips on creating those meaningful partnerships with your child’s teacher/school.

Next, I encourage every family I work with to create some form of Getting to Know Me document to be given to teachers, administrators, coaches, substitutes … any staff who works with your child. Once again, I found one that I love while searching the Center for Children with Special Needs website (www.cshcn.org). This Getting To Know Me template highlights the child’s interests and strengths before getting into medical diagnosis and current health status. That’s how it should be – after all, were talking about a child!

In addition to informing all teachers and school staff, I also encouraging the sharing of basic information with the families of classroom peers. The purpose of sending out a class letter (much like one you would receive if a child in the classroom had a peanut allergy) is to make sure classmates are washing their hands regularly, cleaning their shared and personal spaces frequently, and either staying home or communicating when they are sick. The class letter is the most frequently requested of all the resources I share with patient families. As you’ll see from my sample letter, I encourage including vaccination information on the opposite side for any family that may be overdue for or on the fence about getting vaccinated. Please personalize it using your preferred wording and share it with your child’s teacher … it could mean far fewer germs spreading through the classroom each year.

Bullying is also a topic that comes up over and over again with the patients I see. Bullying is something I take very seriously and prioritize whenever possible, however often times when I investigate these concerns the findings are split. Sometimes true bullying is taking place and we need to put an intervention plan into action immediately. Other times (more often than not), we are finding that children’s with chronic illnesses who’ve experienced long hospital stays and constant one-on-one attention from adults, tend to have a hard time re-integrating into environments that follow expectations of sharing, turn-taking, and delayed gratification. In many of the cases I’ve reviewed, the intervention that we ultimately put into place, is re-learning appropriate group social skills and accepting that each day moments of success (where we get what we want) and disappointment (moments where we do not) and learning how to appropriately communicate the feelings associate with both. Parents Act Now is a great starting point for understanding what bullying is and how to begin a conversation with your child’s school to ensure that all students feel safe and respected at all times.

The Power of Effective Support Services

I urge families to stay aware of normal developmental guidelines and corresponding developmental milestones. I am a firm believer that all children develop differently and at their own pace, however I also know that neurodevelopmental differences due to medical diagnoses, repairs, and treatments can appear at many different times. There is no academic, social, or emotional delay that cannot be accommodated for, however, it first must be identified. I highly urge you to seek some sort of neurodevelopmental follow-up evaluation from your medical provider if you do begin noticing a developmental difference or delay. The National Association of School Psychologists published a great brief guide to understanding and identifying disabilities. You can find that here. Remember, the earlier you seek necessary support, the better the chances of a positive outcome.

When it comes to establishing support services in school, one thing that I get asked all of the time is, “Who’s responsibility is it?” It doesn’t matter the illness at hand, the child’s current status, or even the rest of the question. The answer is always, “It’s everybody’s responsibility.” I often use a guide for families, schools, and students that breaks down individual responsibilities nicely. You can find that info sheet here. Almost every patient we see has some sort of special education service in place, or qualifies for one. My families often come to me with several questions regarding what services are available for their child and how they go about getting some sort of help in place. Special education support accounts for 24% of my current school interventions – nearly a quarter of the families I work with. To make it easier, I’ve created explanations about the three major services that are offered in schools: a Response to Intervention (RtI) Plan, a 504 Plan, and anIndividualized Education Plan (IEP). Click on each link to learn more about what each program offers and the criteria to qualify for that service. Click here to see a useful graphic for deciding which service best fits your child’s needs. There is one main thing that every parent must know and be prepared to challenge: a school can never refuse or delay a parent’s request for a special education evaluation (“it’s too early/late in the school year” or “they won’t qualify for these services” should NEVER be accepted answers). Unfortunately, families often still run into problems requesting or receiving these services for a variety of reasons. Click here to read the Wisconsin Department of Public Instruction’s guidelines for disagreeing with a school’s decision and the information for a full mediation and resolution process. Please note, these guidelines vary by state. Check with your state’s Department of Public Instruction for your most accurate information.

I couldn’t end without the mention of another one of the Herma Heart Center’s top school integration programs. Project ADAM (Automated Defibrillators in Adam’s Memory) is a national hospital-based community outreach program supporting implementation of written and practiced cardiac emergency response plans for sudden cardiac arrest in schools. My final piece of advice for all cardiac families – whether it’s returning for a new school year or school re-integration after an extended hospital stay- make sure your child’s school has both an up-to-date Automated External Defibrillator (AED) and an emergency cardiac response plan in place. You will find the Project ADAM Wisconsin Heart Safe Schools Checklist here. Take this checklist to your school’s nurse or administrator and request they complete and return it to Project ADAM if they haven’t already done so. Project ADAM will work with the school to make sure they have the necessary technology, appropriate emergency action plans, and a schedule of practices and drills to maintain optimum cardiac safety in school.

I hope you’ve found some useful information to set your child on a path to a successful school year. Below you will find one final recap of my shared resources and links. Remember, you are the expert on your child, but I urge you take advantage of those individuals, agencies, and programs there to support you!

Complete School Intervention Resource List

Proactive Planning

Communication

Services


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Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

Support PCHA in the Final Hours of Macy’s Shop for a Cause Charity Challenge!

PCHA is involved in the Macy’s Shop for a Cause Charity Challenge, a friendly fundraising competition raising money for causes like ours. We’ve got just over a few hours to go before our campaign ends. As of this morning we are sitting in 11th place sitting at $13,300 raised. When you add in the generous $3,000 from one of our Medical Advisory Board members as a Challenge Grant and the additional $2,000 from Macy’s we won during Bonus Challenge #1 that brings us to $18,300!! That’s amazing work and brings us almost to our goal of raising $25,000.

It’s not too late to help us Conquer CHD!

We are moving Mountains:

  • Hosting 2 national conferences in 2017 about patient empowerment through public reporting of hospital outcome information.
  • Received national coverage of our efforts on this issue in U.S. News and World report
  • Co-hosted a congenital heart legislative conference discussing public health policy, research and data for congenital heart disease.
  • Presently have a congenital heart disease research law working it’s way through Congress
We are touching lives:
  • In the first 6 months of 2017, we distributed more than 3000 Conquering CHD care packages providing essential resources and support directly to patients and their families
  • Shared more than 5000 copies of our Guided Questions Tool to help patients and family have important conversations with their doctors.
  • Reach between 50,000-200,000 people each week on social media with our education, support, research and awareness messaging.
PCHA is the resounding voice of the congenital heart community. Our voice is strengthened by the involvement of all of those who share our mission. 
Help us reach our goal of raising $25,000 to further that mission. 
  • $5 Provides a family with an educational resource card
  • $50 Allows us to provide a Conquering CHD care package of educational materials and Comfort items to a family whose child is in the hospital
  • $100 Helps us reach 20,000 people through social media
  • $250 Helps support an educational hospital site visit.
  • $500 Sponsors a parent or patient to attend our Legislative Conference in Washington D.C., and advocate for all those impacted by CHD by educating our members of Congress about congenital heart disease on Capital Hill.
 

 

 To Learn more & Donate CLICK HERE

School Intervention Series: Making A Difference

With the summer winding down, it’s just about time to head Back-to-School. Join us through a brief break from our Mental Health Series, as we re-introduce guest writer Kyle Herma, School Intervention Specialist at Children’s Hospital of Wisconsin. The blog will feature Kyle’s 3-part series for PCHA beginning with an introduction on what she does and why. Over the next couple weeks, we will share Kyle’s tips, tricks and recommendations for navigating a school’s system without a dedicated school liaison (and how to start advocating for one in your cardiac center) and provide a collection of resources on how to ensure your child is getting all of the services and supports required to have equal access to a quality education.

 

 

Twenty nine years ago my sister was born with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect that left a chamber of her heart severely underdeveloped at birth. This was at a time when medical technology and surgical repairs options were very limited for a complex baby like my sister. While she ended up losing her battle with HLHS, her short time on Earth ultimately began a battle much greater – the fight to eradicate congenital heart defects completely and in the process, improve medical outcomes and quality of life for those currently affected. Today, the Herma Heart Center (HHC) at Children’s Hospital of Wisconsin is known for having the best published survival rates of HLHS in the world. However, a top recognition like this is not achieved without constant work towards excellence and innovation in all areas of care.

 

Herma Heart Center

How does this relate to PCHA’s “Back-to-School” theme this month? It does on so many levels! Two years ago I was a kindergarten teacher, loving every minute of every day guiding 4 and 5-year-old kids as they discovered their world. I worked in the inner city of Milwaukee at a low-income Charter School – all of my students considered “at-risk” due to a variety of different statistics. Every day I sought to plan lessons that not only were rich in academic content and student engagement, but also focused on building a classroom culture of strong future leaders and community advocates. While I had always been involved with the Herma Heart Center on various levels because of my family’s deep connection, I was a teacher. I loved being a teacher.

In 2015, I got a call. The Cardiac Neurodevelopmental Follow-Up Program, one of the HHC’s leading whole-child focused programs, was expanding and looking to hire a School Intervention Specialist after they noticed a very high need for multifaceted school intervention in students with complex health needs – specifically in the area of pediatric cardiac neurodevelopment. The job requirements outlined a liaison-type service, with the goal of working to ensure clear and consistent communication between the medical staff, the family, and the child’s school at all times. I began researching far and wide. I wanted to learn everything I could about how CHD affects a child’s neurodevelopmental functioning and what type of supports schools have in place to modify for or accommodate these children. All of my searches came up empty! There was nothing. While significant literary research supported that children with complex health needs and chronic illness are at a greater risk of reduced student engagement, higher disruptive behavior, lower academic achievement, an increased exposure to bullying (among many other well-documented negative educational outcomes), structured programs for school re-entry and intervention are rare. In this moment I knew that I needed to step in to fill a role much larger than a classroom teacher.

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The School Intervention Program officially “went live” in February 2015. I began with a very focused population of heart transplant patients that pinpointed those re-integrating into school post-transplant, but also offered intervention services to all of our heart transplant patients no matter how many years post-transplant they were. The response was huge. My patient population quickly grew to all heart transplant patients (including those wait-listed for transplant) and several patients with advanced heart failure who were anticipating a future transplant. My pilot study served 55 cardiac patients, ages 3 (preschool) to 24 (college). The schools’ concerns that were addressed included: attendance and absence support, special education support, attention and behavior plans, and documentation/medical record communication – just to name a few of the big categories. Of those 55 patients, 57% have exited the program with their school concern fully resolved, 36% still receive ongoing school intervention but are making great progress towards their school goals, and 7% transitioned to different medical centers where school intervention could no longer be followed. I’ve witnessed one of my high school student graduate with his class just 5 months post-transplant, I’ve heard from a school nurse that she could not believe a student is finally getting to live a “normal” life without any medical interventions needed during the school day, and I’ve helped a mom send her 7 year old to school for the first time because she finally felt confident the school could handle his needs.

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You may be thinking, “That’s great, but my child did not have a transplant. This doesn’t help us.” I am hear to tell you that it does! By doing a formal pilot study on a small population of patients and proving there is an urgent need for formalized school support, I am establishing both attractive outcomes data and the sustainability of this type of position. I frequently share these outcomes with colleagues, speak about my work at a director and leadership level, and even present at international conferences just so people can see how this seemingly non-medical work is directly related to improved medical outcomes. And guess what? People ARE listening.

 

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I am excited to be sharing with you over the next couple weeks to help bridge the very different worlds of medicine and education to ensure that children with complex health needs, specifically CHD, are not falling though the gaps. Here’s to a great school year!

 

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.