From the beginning, Knox has been determined. Born with only half a heart, Knox was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). He would need three surgeries to have the chance to survive. One out of 100 children born have some sort of heart abnormality. One of the most complex is HLHS. It is a birth defect that affects normal blood flow through the heart. Half of the heart is underdeveloped or not developed at all.
While pregnant with Knox, Christina went for her routine ultrasound. Within an hour she received a call from her doctor saying that they didn’t see any development on the left side of the heart. “Hearing the news that your baby is going to be born with a health problem is devastating, scary and you feel helpless,” Christina recalls.
However, Knox’s parents did their research and one name kept coming up: Mark Galantowicz, MD, chief of Cardiothoracic Surgery at Nationwide Children’s Hospital. They were amazed at everything he had done and his less invasive approach to treating babies with heart issues.
“We in The Heart Center at Nationwide Children’s are very proud of developing and evolving an alternative strategy for the management of children with Hypoplastic Left Heart Syndrome called the Hybrid Approach,” Dr. Galantowicz says. “The whole concept behind the Hybrid Approach is to try to reduce the risks and improve the quality of life and quantity of life in the short and long term. It’s a way less impactful initial procedure that delays the more challenging operation to later in life.”
Knox had the first of a three-part surgery at just six days old. “It gave us comfort knowing that the first surgery, the Hybrid Approach surgery, was less invasive and not a full open-heart surgery,” Christina says.
At six months old, Knox had the comprehensive stage two surgery. It is the most complicated of the three surgeries. There are times where the heart needs to be stopped and parts of the heart need to be reconstructed. The first two surgeries were a success, but the final stage comes with a unique set of challenges. The third surgery is performed when the child is a toddler, which can be very difficult for parents. Knox was three years old when he had the final surgery in August 2021.
More than a year later, Knox is starting a new chapter. He is full of energy and stamina, talking constantly and playing with his brother just like any other 4-year-old. “This journey is better than I could have ever imagined,” Christina says. “Right after surgery he would say mom, ‘I am so brave’.”
Knox is indeed brave. He is also funny and clever, and really loves the outdoors. He loves sports and playing hockey with his older brother.
Ongoing research is essential to care for children born with significant heart defects. Heart defects can affect patients the rest of their lives. Parents like Ben and Christina depend on research advancements to ensure any medical care that may be necessary in the future for Knox will be available to him. This holiday season, when a donation is made, butterflies will illuminate across the front lawn of the main hospital. Every gift not only lights up the life of a child in the hospital, but also helps light the way for groundbreaking research that is changing the lives of kids like Knox.