Aron Matthew Northcraft

Aron’s mother Sara has been an active member of the CHD community, helping to educate people on how to support families after losing a child and advocating at the Legislative Conference in years past. Here she shares his story.

Aron Matthew Northcraft was born January 10, 2007 with Hypoplastic Left Heart Syndrome (HLHS). He was flown immediately after birth to Children’s National Medical Center in Washington, DC where he underwent the Norwood procedure the following day. He recovered, and in May of 2007, Aron, had the second (aka Glenn) of the three stages of surgeries required of all HLHS babies. The next 22 months of Aron’s life were spent at home simply being a little boy. Aron loved playing ball of all kinds (football and bowling were his favorites), loved Curious George and ADORED his big brothers (almost as much as they adored him)! During this time, it was very easy to forget that Aron was living with a very serious heart condition aside from the many medications he took daily.

Reality finally hit in April of 2009 when Aron went in for the third and final stage of surgery, the Fontan. Aron did not do post-Fontan well, and we found ourselves hearing the words “heart failure” and “transplant.” We soon began the journey to determine what was best for Aron. In October of 2009, we started the process of placing Aron on the heart transplant list. Unfortunately, God had other plans for our sweet boy. Aron passed away on November 19, 2009. He was such a blessing and truly a miracle! Aron will forever be in our hearts and on our minds.

When we started down the transplant road with Aron, I began to feel very angry every time I saw someone smoking. I was angry because Aron had no control over the cards he had been dealt and these “smokers” were destroying their life by their choice! Very soon, I was convicted about my health habits. Although I was not choosing to destroy my body with smoke, I was not eating right or exercising and, therefore, destroying my body by not being healthy. I decided in September (with the help of a very special lady) that I was going to start running. Our Fall was a little crazy…and heart wrenching.

After Aron passed away, I set a goal that I would like to run the Apple Blossom 10K in memory of my sweet boy! Our initial idea was to create “Team Aron” and have at least 4 people running in his memory. The more we talked about it, the more we realized how awesome it would be to have a gigantic team. We wanted to not only run in memory of Aron, but to raise awareness about Congenital Heart Defects and our local CHD support program.

Team Aron produced over 40 runners for the Apple Blossom 10K last year! We have encouraged Team Aron members to wear their shirts (if they are not running for a different cause) in as many races as they run in. In the past year Team Aron has been seen in many local foot races (Apple Blossom, Freedom Run, Apple Trample, Turkey Trot and the South Berkeley Christmas parade), a couple of local triathlons, as well as the Ford Ironman Florida.

Mental Health – Beyond Survival, The Struggle with Anxiety and Depression

PCHA continues its series on Mental Health with a piece by nurse and PCHA -VA Board Member, Sydney Taylor. Here, Sydney discusses contributing factors and prevalence of Anxiety and Depression in patients and parents affected by Congenital Heart Disease. 

 

 

 

For the first time ever, there are more adults living with a congenital heart defect than children. This is all thanks to improved medical technology, amazing advancements, and increased knowledge and awareness in treating CHD. While this is certainly incredible news, there are new – and unanticipated – aspects of treating survivors that we must now focus on.

When the field of pediatric cardiology was born, the main goal was to keep patients alive. The beginning

of this delicate science was unfortunately wrought with struggles in patient survival rates. However, as time went on and improvements and advancements in the field were made, patients started living to reach adulthood. But still, the main focus was to simply get these patients to see age 18. On the whole, aspects of everyday life patients may struggle with were – and sometimes continue to be – unaddressed by providers simply due to a lack of research and knowledge.

One of the biggest (and most prevalent) concerns facing CHD survivors is anxiety and/ or depression. Frequent and lengthy hospitalizations, painful procedures, and traumatic surgeries in childhood often lead to profound psychosocial impacts on patients. These impacts can range from minor to life-altering. For example, I can always feel myself becoming anxious when I smell rubbing alcohol or “hospital smell.” I remember this anxiety from childhood, but it had typically been isolated to healthcare-related environments. However, it made the beginning of nursing school and working in the clinical setting very difficult. Other patients may avoid seeking medical attention due to this anxiety, turn to substance abuse to cope with depression, or experience any number of ineffective coping strategies due to a lack of recognition of their unique needs in the medical community.

In a particular study done in adults with CHD, researchers selected patients who appeared to be “well-adjusted”; that is, did not outwardly exhibit signs and symptoms of depression or anxiety. Despite their appearances, 36.4% were found to have a “diagnosable psychiatric disorder, with anxiety or depressive symptoms being prominent [1].” Another study revealed that 18.3% of adolescents (age 12-18) with a heart defect suffer from depressive symptoms, compared with 3.3% of the healthy control group. Additionally, 30% of the adolescent CHD patients displayed anxiety, compared to 10% of the healthy control group [2].

Patients are not the only ones to suffer psychological distress related to their heart defect and treatment experience. Parents of CHD patients are also at risk, and possibly experience greater distress than their children. In a recent study done by the American Heart Association, an estimated 25%-50% of parents experience symptoms of depression and/ or anxiety, “and 30% to 80% reported experiencing severe psychological distress [3].”

There are more factors at play in the development of depression and/ or anxiety in the CHD population than you might think. Patients with more complex defects seem to be at a higher risk of developing anxiety and depression, and interestingly, those who undergo more cardiac catheterizations than others [2]. It has also been theorized that separation from parents due to early life-saving interventions shortly after birth may contribute to psychosocial abnormalities. Other researchers have postulated that early exposure to traumatic events (such as open-heart surgery) contribute to the development of ineffective coping mechanisms later in life. Most intriguing is recent evidence suggesting higher rates of cerebral insult secondary to cardiac dysfunction in CHD patients: in one study, 24% of infants had abnormal brain scans prior to surgery, and a staggering 67% had abnormal brain scans after surgery [4]. Literature is even more scant regarding parental anxiety and depression, but older parents and unemployed parents seem to have a higher incidence of depression [4].

If you or a loved one are struggling with anxiety or depression, it is important to speak with a healthcare provider. Now that heart patients are surviving, we need help in thriving. Don’t be afraid to reach out to someone you trust. You are not alone, and you matter.

 

For an additional guide on symptoms, tips, and when to seek help, please visit PCHA’s Educational Resource on Mental Health. Although this guide addresses parents in particular, the guidance it provides can be applied to patients experiencing difficulty with andxiety, depression, and post traumatic stress, as well. 

 

 

References:

1. Bromberg, J.I., Beasley, P.J., D’Angelo, E.J., Landzberg, M., DeMaso DR. (2003). Depression and anxiety in adults with congenital heart disease: a pilot study. Heart Lung, 32(105–110).

2. Awaad, M. & Darahim, K.(2015). Depression and anxiety in adolescents with congenital heart disease. European Psychiatry, 30(1), 28-31. doi 10.1016/S0924-9338(15)31916-7.

3. Woolf-King, S.E., Anger, A., Arnold, E.A., Weiss, S. J., Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2). doi 10.1161/JAHA.116.004862.

4. Pauliks, L. B. (2013). Depression in adults with congenital heart disease-public health challenge in a rapidly expanding new patient population. World Journal of Cardiology, 5(6), 186-195. doi 10.4330/wjc.v5.i6.186.

 

 

 

Sydney Taylor is a congenital complete heart block survivor, registered nurse, and is the Adult CHD Board Director for PCHA-Virginia. She has required pacemaker therapy since she was 15 hours old. She enjoys coffee and a good book, hiking and kayaking in the beautiful Shenandoah Valley area, visiting national parks, and making friends with any and all dogs.

 

Mental Health – Courtney’s Story – A Mom’s Perspective

As PCHA continues  our current series, Courtney Kile  shares with us how her experiences as Heart Mom to son Sully impacted her mental health.

I still remember the first time it happened. The surgeon had come in to tell us that the open heart surgery performed on my 3-day old son, was an outstanding success.  I remember looking at the surgeon calmly and saying, “Thank you very much,” and I turned on my heel and nearly sprinted down the hallway.  My mom and step mom followed close behind, calling my name, but my brain wasn’t computing her words.  I grabbed the door to the lactation room at the end of the hall and swung it open to close myself inside.

Then I completely and totally lost it.

I sat on the sterile vinyl chair, hugging myself, sobbing, and I think I even drooled a little.  I’d been holding in all these emotions, trying to process everything that happened in the last 30 hours and once I knew he “safe”, I couldn’t hold back anymore.  Little did I know, this would be the start of a near constant internal battle.

My son Sully was born in November 2011, seemingly healthy.  Just 36 hours later, local doctors discovered a Congenital Heart Defect and he was airlifted to the larger, metro hospital.  The 3rd day of his life, a team of doctors and surgeons operated on his 6lb. 8 oz. body. After a spectacular recovery from his first surgery, we handed him off to the surgeons again just 6 months later.  That surgery was also a screaming success.

I considered myself a pretty together person.  I felt like I handled stress well and had healthy coping skills (scarfing a king size Reese’s is a healthy coping mechanism, right?).  As time went on, I noticed myself beginning to change.  When we were getting ready to leave the house for any reason, I would retch and gag, and sometimes even vomit.  I would get sweaty and nervous, and I had no idea what was going on.  If I wasn’t with Sully, I would think of all the horrible possibilities that could happen.  I would replay these scenarios in my head until I would end up in a crying ball on the couch.  What was wrong with me?  Everything was fine, but I just couldn’t figure out what was going on.  I was too scared to talk to anyone about it.  I have a job that keeps me in the public eye.  What if they thought I was crazy?  What would my family think?  I knew it wasn’t normal to need a gallon of Pepto just to go and get groceries.   I’d dealt with a mild form of anxiety all my life, but never like this.  This was different.

Right after Sully turned two, a friend a mine sat me down for a frank discussion.  Being a mental health practioner, she’d seen this before.  She told me that she wanted me to talk to my doctor.  I tried to blow her off, but she pushed further.  Then she said it, “I think you have PTSD.”

Umm… what?

I was stunned.  I wasn’t in the military and hadn’t been through a war.  How could I possibly have PTSD?  There had to be another explanation.

Even though I thought my friend was way off base, I decided to call my doctor.  After talking to my doctor and being referred to a therapist, it was confirmed; I had Post Traumatic Stress Disorder (PTSD). The diagnosis was hard to swallow.  I blamed myself for not being able to control my emotions and thoughts.  I felt crazy.

Then, I started talking to other parents who’d been through the same or similar situations.  It was during these conversations that I realized that I wasn’t alone.  All these other parents had feelings like I did.  Though none of us had been deployed to a warzone, we were on the frontlines of our own; battling for our children’s lives. We’d waged war against catastrophic medical conditions that threatened to kill our children; and sadly, some of those medical conditions took the lives of some sweet warriors.

With a newly restored hope, I decided to talk more about PTSD and mental health.  There is such a stigma surrounding mental health issues.  The world is judgmental, that’s a fact, but we cannot stand silent in battle alone.  We need to talk about it.  We need to let the masses know that this is a real struggle that stems from healing wounds.  Seeing your child hooked up to 20 IV racks, with chest tubes, and a ventilator, is not something you can easily get over.  When you face the mortality of your child, you change. It is something that rocks you to the very core of your being.

The biggest thing I’ve learned since my diagnosis is self-care.  I can’t be the mom Sully needs unless I take care of myself.  Admitting you need help can be tough for people, but it is a necessity.  You can’t do this alone. Do not be ashamed.  We are in this together.

 

I’m happy to report that Sully is almost 6 years old now.  He is starting kindergarten in the fall. He’s happy, healthy, and the joy of our lives.  As for me, I’ve learned tips and tricks to manage my anxiety and panic.  Don’t get me wrong, I’m not perfect.  There are still times that leave me in a nervous mess, reaching for my inhaler.  But those times are few and far between. Every day I choose to take care of myself and not let PTSD control me.

 

 

 

 

 

Courtney Kile hails from Duluth, MN.  She is the mom to an amazing CHD warrior named Sully and wife to Robert.  Courtney and her husband run Project Heart to Heart, a Minnesota based non-profit serving families who have children born with Congenital Heart Defects. She is a paralegal by trade and uses her skills to help CHD families.

Mental Health – Brittany’s Story, Living with PTSD

An often unspoken topic with members of the CHD community is PTSD. For the first piece in our Mental Health Series, Brittany Foster, born with a VSD as well as other conditions, shares her experience with the illness, and how it has affected her life and her perspective.

 

 

“Doesn’t matter how tough we are, trauma always leaves a scar. It follows us home, it changes our lives, trauma messes everybody up, but maybe that’s the point. All the pain and the fear. Maybe going through all of that is what keeps us moving forward. It’s what pushes us. Maybe we have to get a little messed up, before we can step up.” Alex Karev, Grey’s Anatomy

 

For the last 26 years of my life I have experienced trauma.  Those of us living with CHD have been through more traumas than we can count. According to the National Childhood Traumatic Stress Network, there is a specific type of trauma called medical trauma. Their definition states, “medical traumatic stress refers to a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. These responses may include symptoms of arousal, re-experiencing, and / or avoidance. They may vary in intensity, are related to the subjective experience of the event, and can become disruptive to functioning.” The last five years that I have spent going to talk therapy, either once or twice a week, has helped me reflect on my traumas. Therapy has helped me to realize just how deep rooted a lot of my fears, insecurities, and worries are. My stress reactions may seem over the top and hard to explain. How can I possibly cry for hours over something that seems so simple? How can I sit there shaking at the smallest amount of pain but can endure more severe pain through my surgeries? What may seem like an exaggerated reaction to people observing my behavior, is actually a response due to post traumatic stress.

PTSD took many different forms throughout my childhood. I always had a constant fear of my sisters being kidnapped or going missing. For the majority of my childhood from age 6 to 12 I would cry my eyes out when I lost sight of them. “Mom, you were supposed to be watching them!” “Where are they!?” “They are gone.  Someone took them.  They drowned in the ocean.” I recall being terrified at sleepovers and crying to go home because I wasn’t around to watch them.

Reflecting on this time in my life, I am now more aware of exactly why I felt this way. Realizing why you feel a certain way really helps you make sense of how exactly to manage this type of traumatic stress reaction. Just treating the anxiety won’t make it go away and just labeling my behavior as “anxiety” didn’t help me. This “on edge” or “on guard” behavior was because I had a general lack of trust in the outside world. When I was younger I felt as though I was the only one who could protect them. Everyone else, including my parents, were not good enough to watch them. My deepest fear of my sisters being taken from me was directly tied to those who were a huge part of my life who hurt me. I didn’t realize when I was younger that even though the surgeries and procedures hurt, it didn’t mean these surgeons, doctors, and nurses were bad people. I didn’t realize that just because my parents had to leave at a certain point before surgery or during a test, it didn’t mean they weren’t able to protect me. It didn’t mean they were not competent enough parents to know where my siblings were. This lack of trust carried over into relationships as I got older but never was as extreme as the days I didn’t trust anybody to be around my family and me.

Anxieties as I got to junior high and high school became something different for me. I developed obsessions over things I never obsessed over before. My thoughts revolved around being a perfectionist in school. As soon as I had a project, I needed to get it done that day, or I would obsess over it. I needed to memorize every single thing on a page of notes in order to get an A on the test.  When taking the test I would convince myself that I failed. I thought of the worst possible outcome. This was my way of dealing with the bad news that I received over the years at appointments. It gave me something else to focus on. If I prepared for the worst, it wouldn’t seem as bad when the worst happened.

At age 17, this stress and anxiety turned inward. All that was building up over the years, I took out on my own body. I convinced myself I would be able to “cure myself” of all symptoms and struggles, if I just lost some weight and exercised. I became obsessed with this thought. At the time, it was a great distraction from all the physical and mental pain I so badly wanted to ignore. This obsession turned into an eating disorder. I lost 30 pounds in a matter of six months. I struggled through anorexia, bulimia, binge eating, and over exercising. My body image was terrible. I disliked my body for as long as I could remember. I found flaws practically every time I looked in the mirror, even at a young age.

My traumas from chronic illness and the pain, both mental and physical, left me with deep rooted emotional scars. In my 26 years of life, I have managed anxiety, PTSD, body image distortion, addiction in the form of eating disorders, depression, and self-harm. It is so easy for many outsiders to think “you have overcome so much, you should be thankful you are still here.” It is easy for people to think “why would you do that to yourself after everything you have overcome?” The truth is that, what I have so courageously overcome is the very thing that has triggered my emotional responses. I didn’t know how to talk about what I was feeling inside. I didn’t know how to express my fears of hospitals, lack of trust in people, lack of trust and hate for my own body. Now that I have a therapist, I can see just how important they are for anyone who has gone through trauma.

All of the emotions I have now, I choose to feel. I feel the positive emotions and celebrate happiness; I feel negative emotions and allow myself to cry, scream, get angry, and feel the frustration.  I allow myself to feel physical pain and no longer hide under the mask of “I’m fine”. The most important thing to remember is that it’s okay for your children, or you as a CHD warrior, to feel everything so fully.  Emotions are difficult.  Depression, anxiety, and addictions are sensitive topics but they need to be discussed. Use the voice you have. Spread awareness. Trauma leaves scars, both visible and invisible.  The visible ones I’m sure start conversation all the time. Don’t be ashamed to talk about the invisible ones too, that’s how the real healing happens.

 

 

 

 

Brittany Foster is from Cranston, Rhode Island. She enjoys writing, blogging, reading, and spending time with friends and family. Brittany is also passionate about advocating for herself and others. Over her 26 years of life, she has learned to live fully with her conditions. Brittany has learned the importance of acceptance and self advocacy, and she hopes to spread some much needed CHD awareness.  Brittany was born with a large VSD that caused pulmonary hypertension, as well as vascular anomalies, including a right sided aorta, aberrant and isolated subclavian artery, and a form of a vascular ring.  She has had open heart surgery, a vascular bypass surgery for subclavian steal syndrome, multiple heart caths and attempted ablations. Brittany also has a dual chamber pacemaker for sinus node disease/ tachy brady/ ventricular dyssynchrony. She is on full time oxygen therapy due to a genetic mutation that caused the structure of her blood vessels to be too small. Her motto in life is to keep tickin’ through it all! Brittany hopes you can do the same, no matter what life throws your way!

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.

 

A Hero in A Small Package

The ending of June brings one more Heart Dad story. Jason Ruud shares his story as dad to heart kiddo Breanna
 

Faith and Miracles:

When I was growing up, I always considered my heroes to be professional athletes who made incredible moves on the field or court and made the impossible look easy. Little did I know, that in 2010 the word “hero” would take on a whole new meaning for our family. That word became synonomous with courage, strength, and perseverance against insurmountable odds and delivered in our baby daughter, Breanna.

 

 Learning that your child is going to be born sick….really sick

Like many heart families, our world came crashing down as we prepared for the arrival of our baby. After our first child, we were excited to go to our 20 week ultrasound to learn the sex of our second. We watched as the sonographer did there typical measurements and let us know we were having a girl! But, this time was different than with our first. She kept coming back to the heart. We knew by the look on her face something was wrong. Each time she scanned the heart, it started to become obvious to us as well. She left the room and our hearts sank. There was something wrong with our baby’s heart. The OB quickly diagnosed our daughter with single ventricle heart disease. I remember walking into our home after that visit and collapsing to the floor in tears and disbelief. We quickly learned from our new cardiologist that our baby had Tricuspid Artresia. More weeks passed and more ultrasounds. Each gut wrenching scan brought new complications. Eventually, we learned that our daughter would be born with tricuspid atresia, transposition of the great arteries, bi-lateral SVC, and pulmonary stenosis. We officially entered the world of congenital heart disease, and I became a heart Dad.

 

 

 

Breanna’s story

Thanks to the incredible team at Children’s Memorial Hospital in Chicago(now Ann and Robert H. Lurie’s) our daughter was born on June 6, 2010 and transported from our local hospital down to the NICU at CMH to prepare for surgery. I sat there in the NICU alone, my wife still an inpatient 50 miles away, watching cardiologists and surgeons pour over CT scans of our baby daughter. Three days later she received her first procedure, the Norwood and BT Shunt. As I look back on that day, my wife and I were so unaware to the incredibly risky surgery my daughter was undergoing. That changed quickly, when four days after her procedure, the doctor’s removed her intubation tube. What was meant to be a joyous moment, became our worst nightmare. Breanna immediately began to struggle, gasping for air, she quickly turned blue, her heart began to slow…then stop. Our baby daughter had gone into cardiac arrest. She was rushed back into surgery and 10 hours later, an attending doctor came to speak with us. They were not sure why this happened. Fortunately, they were able to restart Breanna’s heart after 8 minutes of “down time” and revise her shunt as a precaution. Her second surgery was much harder than the first. Breanna fought for her life for the next 72 hours. So many moments during those days that we thought we would have to say goodbye. Shortly thereafter, Breanna went into septic shock due to a blood infection. But, Breanna kept fighting. Days turned into weeks, then weeks into months. Each attempt to exhubate the breathing tube was failing, causing additional set backs. After 4 exhubation attempts we decided to trach our baby daughter. 6 months after arriving at Children’s Memorial hospital, Breanna came home. Now tethered to a portable ventilator with around the clock nursing care, our home became her new hospital room. Breanna surprised the doctors by thriving on her trach and ventilator! She received her second of 3 surgeries, the Glenn procedure at 2 years old. Again, she defied the odds receiving the Glenn procedure while still on a ventilator. Between her second and third procedures, Breanna was finally able to be taken off the ventilator. At 4 1/2 years old, Breanna received her 4th open heart surgery, the Fontan procedure.

 

Living in constant chaos

Those initial 6 months were the hardest. I began deflecting my emotions and my inability to protect my daughter into learning everything there was about her heart disease. After leaving the Ronald McDonald House, my wife and I began a grueling schedule that ensured my daughter would always have a parent by her side. For the next 4 months, I traveled an hour and a half from our home in the western suburbs downtown to CMH. I would arrive in time for morning rounds at 7:30am and never missed a single one. To me, my new job was to listen to the doctors, ask questions, and be her fiercest advocate. Her medications, vitals, daily tests, physiology, everything, I knew them all like the back of my hand. I memorized every variable and range in every test and when things were off, I prepared myself and my wife for the “ride.” This was my way of “normalizing” and coping with the intensity of the situation. I’m sure it drove the doctors and nurses a bit nuts. But, I was grasping at anything to control. After rounds, I would hop on the “EL” train and head south to my job, work there till noon, then work from Breanna’s ICU room till my wife arrived and stayed through the night. My wife and I recently reflected on how incredibly flexible my manager was during this time. I know fathers that had to leave their job, just to spend time with their sick children. I was blessed. One less stressor in a volatile situation. The biggest casualty during this time was my 3 year old son. I regret losing 6 months as his father. The chaotic events of those 6 months effect him to this day.

 

The aftermath

Those 6 months are seared into my mind. There’s not a day that goes by that I don’t think about them. There are so many memories that I often reflect upon. The initial 9 weeks at the Ronald McDonald House. The “bad” days sleeping in the chair next to my daughter praying that she will survive the night. Watching the doctors and nurses tirelessly work throughout the night like machines. And worst, the late night ring of the phone that makes you want to vomit. I felt a complete loss of control with no ability to protect my newborn daughter. Fortunately, my faith was my foundation and the only thing that got me through. I now suffer from PTSD in the form of germophobia. I wash myself and my children’s hands incessantly. I will do anything to avoid those CICU rooms. And when we do have to return for sickness or surgery, those emotions and memories come flooding back.

 

I have learned so many things as a heart father. One of the biggest lessons I have learned along the way is hope and humility. As a Father, my job is to protect my family, to keep them safe from harm. A task we fail at miserably when dealing with the complexities of congenital heart disease. There were so many days that I held my baby daughter’s hand in those hospital rooms and prayed to switch places with her, willing to take her pain away and end her suffering. Unfortunately, as a heart Dad, we must rely on other’s to heal our children. Thank goodness my family was blessed with the amazing CICU nurses and staff at Lurie Children’s Hospital and the incredible surgeons: Dr. Carl Backer, Dr. Sunjay Kaushal, Dr. Hyde Russell, Dr. Michael Monge, and Dr. Osama Eltayeb. Without these incredible people, my daughter wouldn’t have defied insurmountable odds and become a vibrant and beautiful 7 year old.

 

Today, I serve on the board of a non-profit. We focus on advocating for congenital heart disease and raising funds for an experimental technology that may someday improve and extend the life of children living with single ventricle heart disease.

 

 

Jason is a 41 year old resident of South Elgin, IL. A western suburb of Chicago. He works in technology as a creative lead, building interfaces for enterprise software. Jason is an avid outdoorsman who’s passionate about hunting and taking his kids fishing. He is also the head coach of his son’s youth football team. He’s been married for 11 years to his wife, Ashley, who cares full time for their 3 children: Caleb(10), Breanna(7), and Jillian(1). Ashley is also treasurer for PCHA – IL.

A Little Love Story

PCHA continues its Heart Dad Series with a piece by Ryan Freund. Here, Ryan shares with us how being a dad to the amazing Adair, as she battles a rare genetic disorder that includes CHD, hip dysplasia, digit issues, scoliosis, tethered cord, hypothyroidism, hypoglycemia, is both the greatest blessing and greatest burden of his life.

 

 

The burden: I was talking with some parents of special kiddos the other day, and we got on the topic of PTSD and began discussing the moment (or moments) that REALLY impacted us emotionally, physically, etc.  The event that really strained us was during our daughter’s last open heart surgery.  Adair required another arch reconstruction and the Ross-Konno procedure, which involves removing the aortic valve, harvesting the pulmonary valve and placing it in the spot of the aortic valve, and putting a conduit in the place of the pulmonary valve.  As this was Adair’s third OHS, we had developed an understanding of how long things ought to take during surgery.  That day, everything just seemed to take extra long…but after 13 hours, we got word that they were closing Adair’s chest and that we would see her in about 30-45 minutes.

 

When time started to drag on toward the 45 minute mark, we got the feeling that things just weren’t right.  That’s when the surgical nurse came out to give us the news that the closure had taken a very bad turn.  Coming off the operating table, Adair’s heart went into ventricular fibrillation, she received two minutes of chest compressions, and she had to be defibrillated.  Once they got her heart stabilized, they re-opened her chest, called in the on-call cath lab team, and needed to check her coronaries to ensure the heart itself was being fed.  After seeing our little girl off to surgery at 7am, we finally got to see her in the hallway at 10pm as she was being wheeled back to the Cardiac ICU.  There were some additional complications during our stay which further intensified our experiences – Adair had an adverse reaction to a medication that made it look like she had brain damage.

 

All told, riding the emotional rollercoaster of being very close to losing our daughter, coupled with the prospect of her potentially having brain damage, we couldn’t talk about the whole experience for about 3 months without being overcome with tears…tears that couldn’t be controlled.

 

The blessing: I hear people say all the time that they “wouldn’t change a thing about their lives, because otherwise they wouldn’t be the people they are today.”  I am here to tell you that I would absolutely take away my daughter’s genetic disorder!

 

But since that isn’t possible, I must say that the past 2 and a half years have been life-changing in so many positive ways.  First and foremost, we have the most precious little child you could ever imagine.  She is tough beyond words, she is sweet, she is funny, and she has this way of drawing you in when you meet her that really grabs at your heart.  I think many others would confirm this, but when people meet Adair, they really seem to love her – truly love her.  She has a way about her that is captivating.

 

She has taught her mother and I about the depths of faith, unconditional love, patience, and forgiveness.  She has given us a remarkable perspective on life that is a true blessing.

 

Speaking of perspective, I will share just a small glimpse into the perspective Adair has given us.  I think sometimes it’s easy for us as parents to check out every once in a while.  Being a parent is TOUGH whether your kiddo is medically complex or not, and the age in which we live offers a lot of distractions.  It’s very easy to flip on the television and hit up Facebook for long stretches.  It’s easy to lose your patience with a behavior.  It’s easy to lose focus.  Now don’t get me wrong, we all need a mental break sometimes!  I would be lying if I said that I’m 100% on all the time!  But what Adair’s life has done for us is bring into focus the preciousness and fragility of life.  We have no idea how much time we will get with Adair, but I can say with certainty that the perspective Adair has brought my wife and me causes us to remind each other that we need to cherish each day.  We need to be present each day.  We need to love fully each day.  How many people get the opportunity to understand the preciousness of life in this way?  It’s a remarkable blessing!

 

I’d like to send some additional thoughts out to the fellow heart dads out there.  For a lot of us, sharing our feelings, our emotions, our struggles, our insecurities is tough.  We’re men, and many of us want to be the strong shoulder to cry on as opposed to the sobbing mess in the corner.  Let me tell you, though, that it’s ok (and probably even necessary) that we talk about our struggles, that we share our concerns, and that we are ever-present for our kiddos.  Being a dad to a special child is a huge burden, there’s no question, but it can also be a huge blessing.

 

I pray that all of you fellow heart families find the daily blessings in your lives as you walk this very special path.  And I pray that if you are a family member or friend of a family with a special child that you love them unconditionally and are able to be a light in those burdensome times of darkness.

 

 

Ryan is a 34 year old resident of New Berlin, Wisconsin who grew up in northern Illinois.  He is in sales in the automation and power transmission industries and loves what he does for a living.  Ryan has been married for 9 years to his wife, Melissa,  who is a mechanical engineer. Melissa now stays home with their daughter Adair full-time.  Adair, is 2 and a half years old and has a newly discovered genetic disorder which explains her complex CHD (interrupted aortic arch, VSD, ASD, surgically repaired bicuspid aortic valve with sub-aortic stenosis through Ross-Konno procedure), hip dysplasia, scoliosis, tethered spinal cord, syndactyly, hypothyroidism, cognitive disability, and a few other things.

 

 

We Make A Good Team

Yesterday our families took time to honor and show our appreciation for our Dads. In our latest blog, Heart Mom, Roxanne Bejarano, shares with us what her husband, Angel, means to her and their family.

My husband is heart dad, Angel Bejarano.

I could not have gone through our experience without the support and guidance from my best friend-my husband. We really made a great team when we found out our son Miles’ heart condition. We definitely leaned on each other and developed a rhythm that nobody else understood. We didn’t get in each other’s way, and both knew we wanted to be with our son 24:7. We never left the hospital, until after his heart transplant surgery. We knew the hard part was over, but that a whole new life was about to begin.

Being in the hospital, waiting for a heart donor, questioning the doctors, and trying to rationalize why our son was in heart failure were definitely stressful times for us to overcome as husband and wife. We’ve been friends for over 20 years, and our friendship became much stronger after going through this experience.

We understood each other and he gave me the courage to know “it was not my fault” – it wasn’t anyone’s fault. The hardest thing about being a mother,  for me, was that I brought a sick child into this world, but knowing my husband will stand by me and not blame me is the one thing that helped me cope through all this.

We learned very quickly that we were in our own world. Nobody understood what we were going through; we were alone. It took our love, strength, and faith to enter into this new parenting mode, and we discovered that nothing else matters but Miles’ health.

Thank you Angel for being my angel. Love you so much!

 

Roxanne Bejarano was raised on the north side of Chicago and is a huge Cubs fan. After meeting Angel in grade school, she and her husband have been friends for more than 20 years and married for six. Roxanne is medical coder for Northwestern Memorial Hospital, and has two sons, Miles and Logan. Her days are filled with caring for her boys and staying on top of Miles’ medical needs, including medications, doctor visits, and speech therapy. When you’re a heart parent, the only people who understand what you’re going through are those that have been in the same situation; that’s why Roxanne and her husband love the heart community and PCHA.

The Immense Sky: Space to Deal, Space to Feel

Our Heart Dad Series continues for the second week of June. Here Margaret King shares how her husband Shawn’s reaction to their journey as heart parents differed from her own.  

As I sit here writing about heart dads, I realize that it’s impossible to finish this piece without my husband, Shawn. So, we are camped out on the patio of a local coffee shop on one of those rare, picture-perfect Wisconsin summer evenings that seem to go on forever, talking about our different ways of handling this journey over the 9+ years now since we heard the news of our son’s HLHS at our 20-week ultrasound.

How can two people walk the same road and yet have two very different experiences? It’s humbling to realize that our own perceptions of the same events can be wildly different, no matter how intimate the relationship. Imagine going on vacation to hike in the Rockies with your spouse, soul mate, and/or dearest friend, and realizing at the end of two weeks of backpacking, one of you had noticed every small detail about the flora and fauna you’d passed, whereas the other had focused on studying map coordinates, local lore, and the geological layers of the mountains.

Would you feel like you were speaking separate languages, and find the other person’s view of the trip incomprehensible? Or would you cherish each other’s interests and strengths, and feel your lives were richer for sharing your different scopes of knowledge with each other?

That’s how the marriage of two heart parents can be. Shawn and I had to find a balancing act, a way to play off each other’s different strengths and try to compensate for our each other’s weaknesses, to avoid the utter exhaustion of duplicating the hard work of raising a little person with a single heart ventricle. In that spirit, we thought it would be best to have a “his & hers” dialogue about our different experiences as two heart parents sharing the same child.

Shawn: You’re really good at handling all the little day-to-day stuff that drives me insane. It’s the endless tiny glitches of everyday problems that wear me down.

Margaret: Yeah, and you’re good with the really big things. I can’t handle the big upsets. I kind of tend to fall apart with those.

Shawn: My strong point isn’t networking or making connections with other heart parents.

Margaret: Whereas I’ve met a lot of people and made a lot of great friends on this journey. I couldn’t do it without them.

Shawn: You stay up to date on the current research.

Margaret: You focus a lot more on creating a sense of normality, while I can get into these funks where I dwell too much on the medical stuff. But, I don’t mind dealing with the school and handling all the teacher meetings and IEP procedures.

Shawn: No doubt!

Margaret: I feel I’ve had a lot more ups and downs and this journey, and you’ve been more of the steady one.

Shawn: The heart condition is an ever-present background hum for me, but I try to keep it in its place. But, it never goes away.

Shawn & Margaret: We both think that it’s ok to deal with the realities of raising a heart kid in different ways. Whether you’re married or a single parent, sometimes the complexities and circumstances of raising a heart child are far beyond what any one person can be reasonably expected to handle. As heart parents, we all need to recognize our own areas of strength and build on these, while relying on others to help with some of the areas where we aren’t so strong. In a heart parent relationship, it’s important to give each other the space to deal and process in our own ways, because two people may handle the same situation very differently.

Giving each other space to deal and allowing each other to work as much as possible in our different areas of strength has worked for me and Shawn. It’s allowed us, in the words of my favorite poet, Rainer Maria Rilke, to see the immense sky before and above us.

“Once the realization is accepted that even between the closest people infinite distances exist, a marvelous living side by side can grow up for them…which gives them the possibility of always seeing each other as a whole and before an immense sky.”

–Rainer Maria Rilke

 

Margaret King is the mom to the almost-9 year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday.

Making the (Heart) World a Better Place

 

In honor of Father’s Day, for the month of June, PCHA is pleased to focus our latest blog series on Heart Dads.  What better way to start than revisiting a powerful message from Heart Dad and recurring guest writer, Chris Perez.

Let’s get one thing out of the way: the day you looked at the grainy ultrasound image as your wife’s doctor started his or her sentence with “unfortunately” or the moment you realized your newborn would be whisked away via ambulance or helicopter, fatherhood became way different. You realized that the formative years of your child’s life would possibly be spent in doctor’s offices vs. on a football field or an ICU floor vs. a basketball hardwood floor. You suddenly found yourself more tired than you’ve ever been, more broke than you’ve ever been, and more scared than you’ve ever been. Being a dad is hard work, and if you’re like me, some days you feel like maybe you’ve got a bit of a grip on this whole things, while other days you feel like the Washington Generals and life is just waiting to douse you with a bucket of water. So how do you know you’re doing things right? Last year I stumbled upon this fantastic quote by Ralph Waldo Emerson, who wrote the following about success:

To laugh often and much;

To win the respect of intelligent people and the affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived;

This is to have succeeded.

I actually have this quote cut out and taped on my bathroom mirror, and I feel like it’s super powerful, especially for a Heart Dad. You see, for us this quote seems a little weird. Laugh? You gotta be kidding me, right? I promise you guys, there are moments of laughter in there … it might take awhile, but it will come.

Maybe you’re not the smartest, but I guarantee you that Heart Dads work the hardest. And it doesn’t take a wall full of degrees to accomplish that. And sure, our kids may not be considered physically healthy, but we can make sure we raise heart warriors who are kind, empathetic, and want to make the world a better place. I think that is what Emerson was talking about there.

To know even one life has breathed easier because I have lived. That’s a big responsibility, but that’s why you share your story, that’s why you advocate for CHD research. That’s why I write my blog. Listen, there are days I don’t feel like doing it. I’d rather sit on the couch and eat a whole carrot cake, but people continue to contact me letting me know how much I’ve helped. And that is what keeps me from quitting. Dads, there are people out there waiting to hear your story … they need to hear your story.  Share it!

The journey of a heart family is full of ups and downs, cheers and tears, joys and sorrows. It would be so unfair to use traditional measures of “success” for a Heart Dad. For me, Emerson’s words are what I hope to achieve. I hope that it works for you too. Because when it’s all said and done, if I never get another raise, if I never make more money, if I never have the nicest car, it will all be OK as long as I’m a great dad who did all he could for his family and others. That’s how I want to be remembered.

So Heart Dads, when you’re giving yet another late night tube feed, or you’re trying to get comfy on that wonky recliner in your child’s ICU room, or you’re flexing off work to go to yet another doctor’s appointment, I want you to do a few things. First, take a few deep breaths. Next, think about the smiles and laughs, think about the awesome kid you’re raising, and think about what you’re doing (or can do) to make the world a better place for Heart Kids and Heart Dads. And my hope for you is that – in that moment – you’re reminded of your impact and your strength. Keep it up, Dads! And have a Happy Father’s Day this month!

HeartWalk2015


Blogger_Perez_ChrisChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.