Tetralogy of Fallot and Craniosynostosis
Being a nurse was a comfort and a curse for Amber Nelson when her son, Owen, was diagnosed with tetralogy of Fallot and craniosynostosis. “Being a nurse helped in the long run,” she said. “I knew how to care for him and felt comfortable bringing him home. But initially, all I knew were the bad things that could happen.”
After being born prematurely in Brewton, Alabama, Owen was soon transferred to Children’s and Women’s Hospital in Mobile. Amber was recovering from an emergency c-section and preeclampsia an hour and a half away when she received the news: Owen’s doctor had detected problems related to his heart and skull. He would need to be transferred to Children’s of Alabama.
Owen was diagnosed with tetralogy of Fallot (TOF), a congenital heart defect that changes how blood flows to the lungs and through the heart. In most cases, too little blood goes to the lungs. Along with TOF, the Children’s medical team confirmed the diagnosis of craniosynostosis, a condition that causes one or more seams between bones in a child's skull to close too soon, leading to increased pressure on the brain if not treated.
The Nelsons spent the majority of Owen’s first three months of life in the Children’s Cardiovascular Intensive Care Unit (CVICU). “The Children’s staff did a great job at educating,” Amber said. “They never let it affect them that I was a nurse. They talked to me on a parent level because when it’s your kid, everything else goes out the window. You’re not a nurse at that point; you’re a parent.”
During those three months, Owen fought for his life. He became septic and required extracorporeal membrane oxygenation, or ECMO, which uses a machine to do the work that the heart and lungs normally do. The eight days that followed were full of hard conversations.
“We met with the chaplain. We were faced with decisions that no parent should have to make,” Amber said. “But Dr. [Ahmed] Asfari worked hard for Owen. After depleting the blood products at Children’s, Dr. Asfari decided to pull Owen off ECMO, and he sat with us and comforted us during this time of uncertainty. We did not know if he would pull through, but an hour later, Owen’s labs started trending up and he was home with his family just in time to celebrate the Thanksgiving holiday.”
Owen’s family was thrilled, but they knew his big open-heart surgery was yet to come. One month later, they made the trip back to Birmingham to hand their 3-month-old child back to Dr. Robert Dabal to fix his broken heart.
Through all of this, the Nelsons also knew Owen would still have to face surgery to reverse his craniosynostosis. Neurosurgeon Dr. James Johnston and craniofacial surgeon Dr. John Grant worked together to remove the fused suture(s) and remodel Owen’s skull when he was 9 months old. This not only protected Owen’s developing brain but allowed it room to grow.
Owen had his third surgery at 4 years old. Children’s surgeons replaced the artificial conduit in his heart. Owen will continue to have similar surgeries until his heart has grown to full capacity. “We have to drive around five hours for our visits to Children’s,” Amber said. “But it is worth it to know that my child will receive the best care from food service, environmental services, front desk, physicians and nurses.”
Now, Owen knows no limits. He is quick to show his classmates his scar, tell them about his surgery, and inform them that he is a miracle. Owen is at the top of his class academically and loves to be outside. As he grows and changes, so do his interests. His parents joke he could become a pastor or a country music star. Because of the Children’s staff and their quick medical intervention, Owen will be able to choose any path he pleases.
