As the world was experiencing the early weeks of the COVID-19 pandemic in March 2020, Ally and Roger were getting ready for the birth of their first child. The couple’s excitement about welcoming their baby turned into worry almost immediately after Oliver was born – he wasn’t breathing. Ally only saw him for a few seconds as doctors cut the umbilical cord before he was moved to another room. Fortunately, Roger was able to go with Oliver. The next time Ally saw Oliver was two hours later when he was in an incubator, connected to several cords and about to be transported to the Level IV Neonatal Intensive Care Unit (NICU) at Children’s Minnesota hospital in Minneapolis.
“I will never forget seeing him look at me, so uncertain of the situation unfolding around him,” remembered Ally.
Congenital heart disease diagnosis
After arriving in the NICU, Oliver was monitored for seizures, intubated and sedated as doctors and nurses worked to determine what was wrong. An echocardiogram revealed he was born with a bicuspid aortic valve, a congenital heart defect where the aortic valve only has two leaflets, instead of three. He also had severe aortic valve stenosis, where the aortic valve is too small, narrow or stiff. The diagnosis came as a shock to Ally and Roger.
“We had no idea anything could be wrong with Oliver. We didn’t know about congenital heart defects and had to educate ourselves with the help of the doctors,” said Ally.
After giving birth, Ally had to stay at the hospital overnight. Once she was discharged and arrived at Children’s Minnesota, the first person she met was Oliver’s cardiologist, Dr. Ian Thomas.
“Roger and I were in a lobby area when Dr. Thomas happened to walk by. He stopped and took the time to explain everything he knew about what was going on with Oliver. He was kind and explained things in a way we, as parents, could understand. It left us with a really good impression,” said Ally.
At only two days old, Oliver went to the heart catheterization lab, or “cath” lab, for a procedure to open his aortic valve. After the procedure, Oliver was transferred to the Cardiovascular Care Center, the Cardiovascular Intensive Care Unit (CVICU) at Children’s Minnesota where he stayed for the next three weeks. During that time, he was slowly weened off oxygen and learned how to eat.
Oliver goes home
As Oliver’s condition began to improve, he no longer needed to be continuously connected to machines. Ally remembers the first time she was able to hold her son without cords and tubes attached to his body. “I couldn’t get him in my arms fast enough!”
After 21 days in the CVICU, Oliver’s heart was steady enough for Ally and Roger to bring him home. When they left, they were told Oliver would likely need open-heart surgery within six months. However, Oliver’s heart started to improve! The medications he was on were helping, according to Dr. Thomas.
“We’re encouraged by the progress we’ve seen in Oliver and his heart. Ally and Roger are incredible parents who have handled the stress that comes with having a child with a congenital heart defect,” said Dr. Thomas.
Oliver is now 2 years old and growing bigger and stronger. On the outside, he looks and acts like any other toddler. But on the inside, he’s still fighting a battle. He’s currently on six-month follow up visits with Dr. Thomas and there is a possibility that he may need surgery in the future.
Finding community
Ally’s advice to other families going through similar health journeys with their children is to find a community. There are several online and social media groups where you can connect with families that might know what you’re going through. Ally has also gotten involved in Camp Odyain, a non-profit that offers fun, safe and supportive camp experiences and community building opportunities for young people with heart disease. “Finding people lets you know you’re not alone.”