Teen Topics – Medical I.D.’s and Taking Ownership of Your Care

PCHA begins its Teen Topics Series for the month of October. In this week’s post, American Medical IDs, introduces I.D.’s as one step toward  families helping their teens take ownership of their own care. Read further on the importance of involving teens in self -care and for a special offer . 

How Medical IDs Can Help Teens with Self-Care

 

 

Adolescents living with congenital heart disease are a rapidly growing population1. Most young people living with a heart condition will need a regular review throughout their lives and adolescence marks the start of a new transition from pediatric to adult health care.

Experts recommend that developing the right behavior and responsibility in self-care should start as early as possible during a child’s teenage years2. A successful transition is central to managing their health such as timely follow-ups with primary care physicians, managing medications, and preparing for medical emergencies.

Medical IDs for Teens with Congenital Heart Disease


Medical IDs are a piece of engraved jewelry that teenagers can wear to take charge of their health in case of an emergency.

 

National health organizations recommend medical IDs for persons living with health conditions including CHD3. In an emergency, congenital heart disease can be hard to identify, especially when a patient becomes unconscious or is unable to communicate.

Teenagers with heart conditions can wear their medical ID as a bracelet or necklace where important medical information is engraved. Each medical ID is unique and should include the wearer’s name, heart condition, such as congenital heart disease or cardiomyopathy, implants such as pacemakers or defibrillator, prescribed medications, and in case of emergency contact(s). 95% of first responders immediately look for a medical ID because access to medical information is vital for timely diagnosis and treatment.

A medical ID can help reduce a young person’s anxieties and offer assurance that they can get the right help when they need it.

 

Self-Advocacy and Raising Awareness  

Starting a conversation about congenital heart disease can be challenging for young people. They are at the stage where they need to belong or fit in with peers. Certain heart conditions can cause teenagers to have symptoms that are more visible than others, such as having blue tinted lips and nail beds or feeling tired4. At some point, teenagers living with CHD will need to communicate and answer questions that friends, classmates, and other people may have about their health.

Wearing a medical ID for congenital heart disease can open a conversation in a positive way about their condition and educate peers of how CHD should be taken seriously. It also opens opportunities for peers and older adults to show their support and advocacy for an adolescent’s health and well-being.

 

Helping your Teenager Choose a CHD Medical ID

Teens can have different views about medical alert jewelry despite its numerous benefits. The need to establish their identity and express themselves can influence their willingness to wear something that may not always reflect their style or personality. This is why it’s important to involve them in choosing a medical ID that they would love and be proud to wear. The good news is, medical IDs have gone a long way in terms of style.

Here are some considerations that you and your teen can make when choosing a medical ID.

1. Medical ID bracelet vs necklace – medical IDs should be worn at all times so go for the type of jewelry they’d be most comfortable wearing every day. One aspect to look at is a teenager’s regular activities such as attending gym class or participating in sports where wearing a necklace could be an issue. In this case, sporty or active medical ID bracelets are recommended.

Alternately, necklaces are preferred by teens who want to wear something that does not get in the way like a bracelet does. Consider how much flexibility is needed before making a decision on the jewelry.  

2. Durability and price – medical IDs range in price depending on the type of material used to make them. Silicone IDs are considered a practical choice by many for its affordability, plus silicone IDs are waterproof and can keep up with most type of activities.

Medical IDs made with precious metals like sterling silver, stainless steel, gold, platinum, and titanium may be more expensive but are valuable pieces of jewelry to own that could last a lifetime.

3. Style – teens prefer wearing medical IDs that reflect their personality and it’s possible with new medical ID styles! They can also choose to custom build their own medical ID bracelet or necklace by choosing from a variety of chain, clasp, and charm styles.

4. Custom engraving – no two people are the same so medical IDs shouldn’t be either. Choose a medical ID that you and your teen can custom engrave with their own name (or nickname), precise medical condition, and their emergency contact information.  

Engraving can be applied on the front and back of your medical alert jewelry. Look for unlimited engraving options so you don’t need to worry about counting the number of words or lines.

Medical IDs can help keep your teenager safe as they develop their own sense of responsibility and care for their own health. Having them wear a medical alert jewelry can let you enjoy peace of mind while giving your teenager the independence that they need.

 

PCHA Members Get 10% Off on American Medical IDs  

The Pediatric Congenital Heart Association (PCHA) has partnered with American Medical IDs to make medical alert jewelry more accessible to its members. Members can enjoy a 10% discount on all medical IDs (5% on gold) and for each purchase, American Medical ID will give back another 10% to support PCHA’s advocacy.

To enjoy this special discount, enter the discount code PCHA upon checkout or start shopping for medical IDs here.   

 

Resources:

  1. http://www.sciencedirect.com/science/article/pii/S0031395513001429
  2. http://www.paediatricsandchildhealthjournal.co.uk/article/S1751-7222(10)00155-1/abstract
  3. https://www.americanmedical-id.com/faq
  4. https://www.nhlbi.nih.gov/health/health-topics/topics/chd/signs

 

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

 

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


SAMSUNG CAMERA PICTURES

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: 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.

 

Herma_Kyle

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.

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

Congenital Heart Disease (CHD) impacts about 40,000 newborns a year in the United States. Single ventricle defects are a complex subgroup of CHD, affecting approximately 5 out of every 100,000 newborns. In addition to normal pediatric and adult primary care needs, these patients are impacted by frequent follow up, complex testing, screening, re-interventions, surgeries, consulting providers, and care throughout a lifetime. This care not only impacts the patients, but the entire family system, including siblings, parents, grandparents, and extended family. The Comprehensive Single Ventricle Roadmap is a novel idea stemming from the persistent questions families have brought forward trying to understand the process of single ventricle disease over time and its neurodevelopmental effects.

Speaking from my personal experience as a younger sibling of a single ventricle patient, this kind of guide has been desperately needed for many decades. The first “blue babies” were given options for a better quality of life, and as research and outcomes have improved, these patients are now living into adulthood. Since arriving at Lurie Children’s Hospital in 2016, I am pleased to see the transformation of the idea evolve so promptly into a formal patient engagement strategy (available in English and Spanish) under the guidance of our entire team. I am specifically incredibly grateful to Dr. Kiona Allen and Amelia Aiello who agreed with this vision, making it a reality for patients and families.

Fontan Roadmap

https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/single-ventricle-roadmap.aspx

Guiding Families Through the Journey

Now that you have been introduced to the roadmap, imagine yourself learning about the diagnosis of single ventricle CHD prenatally. The typical excitement and thrill of learning you are on a road to being a parent of a healthy new baby is not the same joy for parents and families faced with an incurable single ventricle disease. The stops along that road and the topics you’ll discuss are critical, important, costly, and personal. The unknowns, outcomes, and trajectory of this road trip are overwhelming to comprehend. Emotions and fears are often high, breaking down the normal anticipatory excitement and joy.

The Comprehensive Single Ventricle Roadmap is not a pathway any parent eagerly seeks out; yet, it is essential to living life with single ventricle disease. It requires thoughtful planning in an already busy family life schedule to organize the daily care that must be performed seamlessly within the diagnosis and treatment of single ventricle disease. This population is only several decades old; thus, the unknowns within single ventricle care are many. Investigating the latest research outcomes is an essential part of the journey — this includes understanding and coping with the lack of care options. Medical science and care have often not evolved fast enough to benefit children with single ventricle disease. Discussions with families about the surgical and other milestones on the journey are not easy conversations. The unique framework of the roadmap provides a visual guide, allowing families a way to understand the disease process. It also allows for valuable transparent discussions about opportunities for positive coping, hope, and fostering resilience along individual family’s pathway.

The Roadmap is not a “cookie cutter” framework meant to fit every family’s story completely; no two patients (and families) will have the same journey. However, it helps families visualize and more fully understand what care throughout a lifetime looks like, and allows families to anticipate major milestones in a specific time span of a child’s life, such as the newborn surgery. Identifying this point in time allows for transitional discussions regarding navigation in and out of acute and chronic care. These conversations often raise questions about the acute issues currently present for the patient and allow opportunities to explain our other patient engagement tools. For more helpful tools follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/home-monitoring-program.aspx

Typical questions from families during the newborn surgery period include:

  1. How will I be able to care for my newborn after surgery?
  2. What is home surveillance monitoring and will I be able to breastfeed?
  3. What if I need to go to the ER or another health care provider?
  4. What does follow up look like in the HeArT clinic (High Acuity Transition Clinic) and the pre-Glenn visit?

Not all stop points are anticipated. A couple examples of unplanned cardiac triggers across a lifespan include a 12-month-old s/p Glenn with moderate to severe AV valve regurgitation failing to thrive on medical therapy. Because of the cardiac issues, this patient moves into the blue circle entitled additional procedures. This may include potential re-operation for valve concerns before the anticipated next surgery in the journey, the Fontan operation. A second example is a 15-year-old s/p Fontan with arrhythmias requiring placement of a pacemaker/AICD that moves into the additional procedures post-Fontan for arrhythmias not responsive to medical management. Lastly, a 40-year-old s/p Fontan with failing function requiring listing for transplant that moves into the additional procedures post-Fontan and in essence trades one disease state for another (single ventricle physiology for transplant).

Striving for Anticipatory Guidance and a Successful Transition to Adult Care

One goal of the roadmap is to provide cardiac anticipatory guidance for families on the normal developmental milestones in life (marked by schoolhouses and graduation caps) and indicates the need for continued cardiac neurodevelopmental screening. The roadmap creates a framework to discuss difficult topics, potential complications, disease trajectory, issues that develop because of single ventricle physiology, and new cardiac concerns. When new issues develop that require attention, we have open conversations with the family that outline goals, medical options, surgical palliation and outcome statistics. Included in the conversation is a diagnosis review utilizing images that are tailored to the child’s individual anatomy to explain the current anatomy and potential next phase of the child’s journey.

The second goal of the Comprehensive Single Ventricle Roadmap is to foster developmentally appropriate health-promoting behaviors as our patients transition to adulthood to enhance the longer term quality of life. In the early-late teen and adult years, decision-making shifts from primarily parent-driven to patient-driven. This can be challenging for all involved. The milestones on the roadmap visually guide patients and families along the valuable process of each child’s maturation, identifies opportunities for transition of care from parents to patients, and highlights ongoing surveillance monitoring of the many consequences of Fontan physiology to achieve the ideal outcome with the best quality of life. This process is individual for each patient and evolves over time. Success is achieved when coordinated, developmentally appropriate, and psychological supportive care creates patients that advocate for themselves in adulthood and maintain the most positive health promoting behaviors in lifeTo see more on developmental Milestones follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Documents/developmental-milestones.pdf

Lurie Children’s Hospital has a creative way of facilitating this transition within the Single Ventricle Program. The pediatric single ventricle clinic overlaps monthly with the single ventricle adults being seen in the Adult Congenital Heart Disease (ACHD) program. This allows for collaboration, a slower transition, and a formal hand off of care over time instead of a more rigid fixed timeline. To learn more on our website, follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/index.aspx

 

 

Michelle Steltzer has 20 years of nursing experience in fields from oncology to pediatric cardiology. She received both her bachelor and master’s degrees in nursing from the Univeristy of Wisconsin-Madison.

Michelle had a critical role in the development of the first home surveillance monitoring program for pediatric cardiology patients way back in 1999. She then worked collaboratively with the Joint Council on Congenital Heart Disease Quality Initiative while employed in Boston. Michelle expanded feeding protocols within congenital heart disease to include breastfeeding.

In addition to having worked at Boston Children’s Hospital and Children’s Hospital of Wisconsin, Michelle now works as a pediatric nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago. Growing up with a sibling with a CHD, Michelle learned by experience and by watching her mother just what services were lacking for CHD families.

 

PCHA Media Relations

Contact PCHA

Inquiries from reporters and members of the media, please email advocacy@conqueringchd.org or call (608) 370-3739.

Frequently Requested Information:

Key CHD Facts:

  • Congenital Heart Disease (CHD) consists of problems with the heart’s structure that are present at birth with potential lifelong implications.
  • CHD is the most common birth defect.
  • 1 in 100 babies are born with CHD.
  • Nearly 40,000 infants in the U.S. are born with CHD each year.
  • CHD is the leading cause of birth defect related deaths.
  • Approximately 25% of babies born with CHD will require life-saving intervention in the first weeks of life.
  • Approximately every 15 minutes a family learns their child has CHD.
  • There is no cure for CHD.
  • Estimates suggest there are 2.4 million Americans living with CHD.
  • People with CHD are at risk for serious medical complications and require specialized care for life.
  • CHD is now the most common form of heart disease during pregnancy in the U.S.
  • Costs for hospitalizations related to congenital heart disease were more than $6 billion in 2013.

For additional information, please reference our CHD Fact Sheet.

About PCHA

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.”  We are founded on the key purpose to be the resounding voice of the pediatric patient population and are accomplishing this through collaboration with patients, parents, providers, and partner organizations in order to improve quality and outcomes through CHD education, support, research and awareness.

Our key program areas include:

  • Patient Advocacy and Policy Work
  • Promotion of Federal Research and Surveillance Funding
  • Patient Engaged Care and Patient Empowerment
  • Patient Education and Support
  • Transparency and Public Reporting of Hospital Outcomes
  • Quality Improvement
  • Sustained Access to Recommended Specialized Care Throughout the Lifespan
  • Promotion of Meaningful and Targeted Research

 

 

National Reading Month: It’s My Heart Book

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the first post of our series, the Children’s Heart Foundation shares an overview of the It’s My Heart book, a resource for families affected by CHD. PCHA and the Children’s Heart Foundation are partnering to include the It’s My Heart book in every Conquering CHD Kit. 

 

 

 

Receiving a congenital heart defect (CHD) diagnosis is often an emotional, confusing and overwhelming time.

In 2003, The Children’s Heart Foundation (CHF) – along with a dedicated group of doctors, nurses and parents – set-out to address a dire need noted by patients with CHDs and their loved ones. Although doctors and nurses often explained things well, written materials were either too simple (pamphlets on how the normal heart works) or too complex (medical journals). There was a need for a resource guide with clear writing and illustrations on the most common kinds of heart defects, tests, equipment, surgical procedures and medications.

Published in 2004, It’s My Heart, was written in plain, understandable language. It provides descriptions of the types of CHDs, explanations of the various tests, surgical procedures and treatments for CHDs. This book also contains helpful “before and after” diagrams, a glossary of medical terms, and much, much more.

“Hours after my son was first diagnosed with a CHD at 2 days old, our nurse handed me a copy of It’s My Heart in the hospital. I remember being so scared and confused at that time; it felt as if everything was broken,” said Sally Powers, CHF Executive Board Member & Heart Mom to Sam.

“But that book was one of the first resources I had to help lift me up and move me forward on our journey with CHD,” Sally continues. “And that made me feel hopeful.”

Today, in its’ second edition, It’s My Heart is still a widely used resource book. CHF distributes this book to patients, parents, family members, healthcare professionals and friends of congenital heart defect patients worldwide.

It has always been a high priority for CHF to offer the book free-of-charge. Thanks to support from Medtronic Foundation, Northwestern University Dance Marathon 2011 and various grants, CHF has been able to continue to do so.

“I’ll always be thankful that The Children’s Heart Foundation knew the need for newly diagnosed parents to have that kind of easy-to-understand resource at such a critical time,” Sally said. “My son is 8 now and I still refer to It’s My Heart often.”

To order your free copy of It’s My Heart, please visit: http://weblink.donorperfect.com/Itsmyheartbookorder.
If you have any questions or to place an international order, please contact Rosemary at RWheeler@childrensheartfoundation.org.

 

 

About The Children’s Heart Foundation

The mission of The Children’s Heart Foundation is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. For more information, please visit:www.childrensheartfoundation.org. Follow us on Facebook and Twitter.

 

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, Kyle shares a wealth of information for 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? Continue reading