In continuing our topic of transparency, PCHA shares this family’s story in navigating the difficulties of finding the right care for their little boy, John.
We moved to a new community a couple of years ago and it was time for my three young children to see a dentist. We had no information to assess what dentist was the right one for our family. Who specialized with children? Who had years of experience in order to master their skills? Who had qualified assistants who performed the important cleanings and post care? Which dentist had their patient’s best interest in mind instead of lining their own pockets? But when I stepped through the front door, I knew I was in the right place. On the bulletin board in the waiting room were the hand-written words, “Love People. Use Money. Don’t Love Money and Use People.”
Five years ago we stepped into the new community of Congenital Heart Defects (CHD’s) when I was pregnant with our third child, John. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and would need three open-heart surgeries within his first few years of life. The first, and most invasive, surgery would be needed within days of birth. The limited information parents have when researching a dentist is eerily similar to choosing a pediatric heart surgeon. But this was not a small cavity that needed to be filled.
Finding this care was not easy. It’s a big decision left to chance because factual information is difficult to find and, if you’re like me, parents often don’t know who or what questions to ask. My conscience propels me to publicly explain the difficulties we had leading up to our son’s care decisions, in hopes of raising awareness as to what’s been termed as the “transparency issue” in the pediatric heart world.
I was around 22 weeks gestation when the ultrasound technician couldn’t find the left side of John’s heart. The left ventricle is responsible for pumping blood to the body. Hypoplasia means “under formation”. I wondered what I did to cause this severe heart defect. Was there a day I forgot to take my prenatal vitamins? My husband and I both shut down. We were hurting deeply and naturally concerned for our unborn child and the ramifications this would have on our marriage, other kids, finances, job, and all the responsibilities it takes to be a good parent to a child affected by CHD.
Together as a family, pregnant with baby John, HLHS
We had a hard time remembering what the acronym HLHS even stood for. It was all very overwhelming. The internet was our first teacher, but later, when we met with a perinatologist (a high risk OB physician), our suspicions were confirmed. We were completely unaware that there are hospitals willing to perform invasive, complex surgeries on fragile infants with limited experience or success.
The doctor, in his quiet voice, told us it was an especially bad case of HLHS because of John’s extremely small aorta. He said there was a chance we could lose the baby in utero. Twice, he brought up termination. Thinking back now, I find it illogical that presenting termination of our child as an option was legally required, but presenting transparent information about various pediatric heart centers and their outcomes, which can give heart kids a fighting chance at a qualitative life, was not.
So many questions were racing through our minds by the time we met with the pediatric cardiologist. We were eager to trust someone knowledgeable and get a feel for what life was going to look like for our family.
I was pregnant and tired when the cardiologist performed a thorough and exhaustive echocardiogram of all the tiny little valves, vessels, and arteries of John’s quarter-sized, two-chambered beating heart. Afterward, the cardiologist sat at eye level with us, showed us diagrams of the heart, and confidently began to explain the three open-heart surgeries that were needed to save John’s life. The cardiovascular system of our newborn baby’s heart needed to be completely reconfigured, including extensive reconstruction of his tiny aorta.
But a thick, confusing blanket of vagueness descended when I asked where we needed to go for these invasive surgeries. He shrugged his shoulders in response. I asked about heart kids I was following on social media and he told me their hearts were great, but it was the eating issues they struggled with. There was a negative connotation in his voice when he answered our questions about other hospitals in the area, suggesting that a teaching hospital would just have a lot of doctors running around, telling us what to do. His expectation was to stay local for the surgeries.
The cardiologist removed himself from the conversation. He never gave us any qualitative facts about statistics, credentials, or historical experience. There was no discussion about recovery and the complications that can easily arise after surgery. His indifference was hurtful and placed John in a dangerous position. Something inside me told me to protect my child from this practice.
Therefore, we entered into our own research process completely blind and on our own. There was so much at stake and the pressure was emotionally exhausting.
FINDING THE RIGHT CARE
We had no idea where to start. On the internet I read dozens of blog posts, describing the daily ups and downs of post-surgery recoveries. Almost every writer was advertising whichever hospital or doctor they had become emotionally attached to. Hospital websites were filled with marketing techniques. The culmination of everything I was reading on-line only caused me to withdraw further.
Out of desperation, I called four different heart moms who all went to four separate heart centers and started to compare notes. My husband spoke with another heart dad that traveled a substantial distance for his child’s surgeries. We called a family practice doctor we knew, who talked to other doctors he trusted. Hard facts were nowhere to be found.
While searching for information, I attended a local support group meeting filled with some of the strongest mothers I have ever met. It was like a tidal wave of one horrific tragedy after another. Tangible information was hard to find, but thankfully there were whispers and private conversations. I ended up getting a name of a surgeon’s nurse who I could call for help.
After consulting with two different surgeons, both at their respective hospitals, we decided for John to receive care at a nationally ranked center of excellence. It was their seasoned experience, as a whole, that set them apart. As I type this, I’m fighting back tears of relief and joy, because there was a high likelihood that John would be dead or disabled had we not found our own way to this great hospital.
Doctors and nurses surrounding John’s bedside after his 2nd OH surgery, the Glenn.
If you are a soon-to-be heart parent, your child is amazing and worth fighting for! When it’s your blue baby coming into this world, gasping for breath, and about to be placed on that operating table, you’re going to want to be at a hospital that’s not afraid to truthfully share their outcomes of whatever procedure your child needs. If you need help or guidance during your research process, you can use PCHA’s Guided Questions Tool for practical advice.
Transparency improves trust and is essential to improving quality and outcomes. Parents deserve to be properly and truthfully educated on their viable options of where to go for surgery and recovery. Choosing which hospital to go to for invasive surgeries can be the difference between life and death. It can be the difference between your child walking off the school bus to go to Kindergarten or spending the rest of his life in a wheelchair. And what we discovered is, finding a good surgeon isn’t enough. Infants and children recovering from open heart surgery need a supportive and organized system in place due to complicated recoveries. Thankfully, John was at a center that had specialized equipment and experienced cardiac sub-specialists readily available. He is one of the lucky ones. He is the real, beautiful, amazing little boy behind this transparency story.
John was a breastfeeding 9 month old when he crawled across the living room. He took his first steps at 14 months of age. And today he continues to develop normally, graduating from preschool, alongside peers his own age.
We vacationed over the 4th where he:
Jumped into the lake with his family and yelled, “CANNON BALL!”
Stood on his head.
Climbed the playground equipment.
Learned how to fish.
Ate Ice Cream.
And shouted from the hull of the boat, “To the beach, daddy, full speed ahead!”
And that’s exactly what he’s doing. He’s a precious little boy moving full speed ahead as he grows, develops, and begins to understand his important place in this world.
John turns 5 years old this month with a bright and promising future in front of him! He lives in West Des Moines, IA with his parents and two older siblings, Abigail and Caleb. He receives care at The University of Iowa Children’s Hospital in Iowa City, IA where he successfully underwent the Norwood, Glenn, and Fontan open-heart surgeries as well as an interventional cardiac catheterization where a permanent fenestration was inserted. He has dealt with complications including Chylothorax, NEC, Embolic Stroke, PLE, and Plastic Bronchitis. He sends out a huge thanks to all who have worked together to make his life what it is today.