Success story of child with rare heart syndrome

With today being the final day of American Heart Month, we introduce to you a success story of a child living with hypoplastic left heart syndrome.

Narissa Behrens-Brown said, “We went in for one of our ultrasounds when I was pregnant and found out that our child was going to be born with a birth defect, and that birth defect was him being born with a heart condition called hypoplastic left heart syndrome.”

The defect causes the left side of the heart to not form correctly, which leads to abnormal blood flow through the heart.

This type of congenital heart defect is very rare, occurring in about one out of every 4,000 babies born in the U.S. each year.

Because of the seriousness of the disease, Eli went through his first open heart surgery at Ochsner Health in New Orleans two days after his birth. Dr. Diego Lara said, “Babies as you can imagine are tenuous after that surgery so we keep them in the hospital for about a month as they heal and kind of learn to eat and do all the stuff the babies are supposed to do, and then we send them home and follow them very closely until they have their second surgery around six months.”

After a successful second surgery, Narissa says she could not express her thankfulness enough towards the cardiology staff at Ochsner Health.

One of her favorite pieces of advice from Dr. Lara was to treat him and love him just like you would any other kid. “What I tell these families is their kids are never going to have a normal heart, but like I said before the goal is for them to kind of not know that, you know for the kids to just live their lives and just be happy kids and that’s exactly kind of what Eli is doing right now.”

Eli is now two-years-old and is loving every second of life. He has high energy, never meets a stranger, and loves playing all types of sports.

Narissa is reminded each and every day that her son Eli is a miracle and she hopes her story will inspire others as well. “Because of the inspiration, awareness, and a kind reminder to never give up on faith, your prayer warriors, the love of your family and medical team… without that, yes it’s going to be difficult to get through your journey. We are very thankful to be where we are today.”

Eli will have his third heart surgery next summer.