When Valerie was 5 years old, Brant and I noticed her energy and endurance greatly decreasing. She was unable to run for more than a minute or even go on a quarter mile walk without needing breaks and getting winded. Her endurance seemed to take a sharp turn for the worse in the summer later that year. She developed abdominal bloating. Her ability to play outside with her brothers or neighborhood friends was becoming increasingly difficult. She also would become overheated easily; she couldn’t be outside in the summer heat for long at all before needing to go back inside to the AC. Her appetite also started to dwindle. All her symptoms reached a level of concern to the point where we needed to investigate a solution with the help of medical professionals. After lab work with the pediatrician to rule out things like diabetes, celiac, and Crohn’s, they performed an abdominal ultrasound to rule out foreign growths. The pediatrician also suggested getting an abdominal x-ray, which revealed an enlarged heart. Upon reviewing the x-ray, our pediatrician urgently recommended we take Valerie to a hospital to be further investigated.
On July 30, 2022, we drove to the ER at a local children’s hospital. While in the ER, they informed us that Valerie was in heart failure, but provided no specific details. The term “heart failure” felt so heavy and shocking. Valerie was only 5. “Heart failure is an old people problem,” is what I thought at that moment. We were admitted to the cardiac floor directly from the ER to await further tests, and to talk with the cardiologists. The short version is the testing concluded with a diagnosis for Valerie of restrictive cardiomyopathy (RC). The severity was unknown without doing a heart cath to measure the pressure in the heart and by others. Valerie had her heart cath done, which revealed pressure numbers more than triple what they ought to be. We now know Valerie has a rare type of cardiomyopathy at a very severe level.
They sat us down and explained that the only “cure” for RC is a heart transplant. However, with how high Valerie’s lung and heart pressures were, to do a heart transplant as they stood would fail. The only way to succeed with a heart transplant was to lower the pressures to a reasonable level first. To achieve that, they offered a medicinal and surgical option, as well as the option for supportive care at home. We decided to try the less invasive medicinal option first, which failed. They offered us the surgical option of VAD to heart transplant, but with no assurance that it was a successful option. Their explanation sounded very much like a “maybe.” Valerie had just been through a traumatic day of medicinal failure, and at that time we were not prepared to put her through anything more invasive. We opted to bring her home for supportive care and pursue second opinions.
We had several recommendations to have Valerie seen by Dr. Devyani Chowdhury, pediatric cardiologist at Nemours Children’s Hospital, Delaware. Dr. Chowdhury told us that after talking to her colleagues about Valerie’s case, they immediately recalled a very similar case they treated nine years prior. A conversation with Dr. Christian Pizarro, Chief of Cardiothoracic Surgery, left both my husband and I full of confidence to move forward with the VAD to transplant option. Dr. Pizarro’s knowledge, and clear explanation of Valerie’s condition and the likely successful outcome that could be achieved, was very reassuring. He explained the VAD would definitely lower her pressures far enough to do a transplant, it was more a question of how long it would take. Dr. Chowdhury mentioned to us that much of the success of a VAD is how it is placed. She said we could not ask for a better surgeon than Dr. Pizarro. She spoke so highly of his skill. Between Dr. Chowdhury’s positive words about Nemours and talking to Dr. Pizarro himself, we felt strongly that the Lord had worked in leading us to the best hospital option for Valerie.
We had a transplant meeting with the cardiology team to talk through what we were about to walk into, starting the journey to a heart transplant. At the meeting, we confirmed Valerie’s need and eligibility for a heart transplant, gained an understanding of the process, and were advised on what a realistic timeline might be.
Throughout every surgery, stroke, and recovery challenge, we felt tremendous support from our care team at Nemours. The longer we were at the hospital, and the more we got to know each team member, the more we felt that Valerie was under the very best care. Each person is so skilled, qualified, and top-notch. Since being discharged, we have had more time to reflect on all that Valerie came through and how thankful for the incredible team of people who worked hard to bring her through. We believe the Lord worked many miracles for Valerie, particularly in how well she recovered from two bad strokes. We attribute Valerie’s success in her heart journey to the goodness of God and the skill of those at Nemours who cared for her. Both VAD surgery and transplant surgery went as smoothly and perfectly as anyone could hope for. After experiencing that, it seemed evident that the Lord led us to the right surgeon, who performed with incredible skill and took excellent care of Valerie.
