Born with Half a Heart

By Melisa Fasburg

Our son Jace was diagnosed with a severe congenital heart defect called Hypoplastic Left Heart Syndrome, also known as HLHS or Half a Heart Syndrome.

Before Jace was born, we were told he would need at least three open-heart surgeries: the Norwood at about 1 week old, the Glenn at approximately 2-3 months old and the Fontan between 3-5 years old.

When Jace was born, he was immediately brought to the NICU, where he received oxygen, IVs and his first echo.

Jace’s breathing and heart function quickly declined, and he was rushed into the operating room for his first open-heart surgery. But before the surgeons could even begin the operation, Jace went into cardiac arrest. The surgeons had to open up his chest to shock his heart. Thankfully, they got Jace’s heart beating again.

Due to many complications, Jace needed three open-heart surgeries prior to the Norwood, which he received at 20 days old. After the Norwood, Jace had many ups and downs including: tachycardia episodes, desaturations, silent aspiration and a bad chest infection that led to his fifth surgery.

At 2 months old, Jace got to come home and meet his brothers for the first time. Only parents were allowed to visit him in the hospital due to COVID-19. Jace was on a feeding tube, a continuous oxygen monitor and lots of meds when he came home. He also had tons of doctor appointments with many different specialists, but he did well until his next scheduled open-heart surgery.

Jace’s sixth open-heart surgery was the Glenn at 3 months old. He had a remarkable recovery and only had to stay in the hospital for two weeks. 

Then, besides appointments, Jace focused on physical, occupational speech, language and swallowing rehabilitation therapy for almost a month before he was admitted back into the hospital for a high fever. The doctors found Jace had an infected blood clot where his pulmonary artery meets his lungs. He was treated with aggressive IV antibiotics in the hospital for two months. 

Jace spent most of the first six months of his life in the hospital. This understandably caused some developmental delays, but every day Jace impressed us with his resilience and strength.

Now, Jace is right where he needs to be developmentally. He’s a bright, funny, rambunctious 2-year-old boy. Besides getting sick easier and more often than most kids and perhaps seeing his scar, one may never guess Jace was born with half a heart.

Jace still needs at least one more open-heart surgery (the Fontan) and inevitably a heart transplant, but right now we appreciate and celebrate every single moment we have with him!

For more information on this health topic, visit heart.org.

Would you like help dealing with heart or stroke conditions -- either yours or someone else’s? Join us in the AHA’s Support Network! We are an online community of patients, survivors and caregivers where you can share your experience while getting encouragement, hope and informational resources from others who have been there. Membership is free and the benefits can be priceless. Register today.