Bryce - born 2005Two weeks after a routine ultrasound at 18 weeks, I was asked to repeat it because "they didn't get good pictures, the baby was not in a good position." We went for another ultrasound at 22 weeks and later than night my OB/GYN phoned and told me I had to see a Pediatric Cardiologist. The closest one we found was two hours away and made the appointment for the following week. Dr. Satou performed the echo and within minutes told us something was wrong but would discuss it when he was finished.
He told us our son had Hypoplastic Left Heart Syndrome as well as an intact atrial septum. He told us our options and termination was not one for us and we told him we would do whatever experimental procedures there are to increase the 20% chance of survival they had given us. He put us in touch with Boston Children's Hospital who performs fetal interventions and two days later we drove to 5 hours to Boston for a meeting with Dr. Tworetzsky.
At the meeting, they did another echo and told us that they could go in now and open the atrial septum which would increase his survival rate to 40%. They also said this would be his only chance to survive. Surgery was scheduled for Wednesday, two days later and it was successful!
Bryce was born at 37 weeks on February 23, 2005. Within 45 minutes of being born he was taken to the catheterization lab. While he was there, he went into respiratory arrest for 25 minutes. When we finally got to see him, he was very puffy and they told us that it was going to be a rough road. I think it was a week before I finally got to hold him. When he was 10 days old, he had his first open heart surgery. I think it was six hours later and we got to see him, chest open, more tubes and lines that before he went in. Now all he had to do was pee to get rid of the fluid.
After four and a half weeks in the cardiac ICU, we finally were able to move to the "floor". The goal now was to eat and gain weight. Over the next two and a half weeks, Bryce got a staff infection and had a g-tube placed. It was a total of seven weeks before e got to go back home to update New York.
When we got home about two weeks later, he got another staff infection which landed us in the hospital in Westchester. He got sick again in August so I drove him to the ER of Boston Children's and it turned out he was ready for his next open heart surgery. He had the bi-directional Glenn on 8/17 and we left on the 29th. I drove back to Boston 3 days later with a very sick baby with yet another staff infection and an infection of the bowels. We left again to come home about a week later.
Bryce has been doing great ever since. He had a cath about a year later to see if he was ready for his next surgery, but he wasn't. It's now a year later and he hasn't had his third surgery yet. He was having PC appointments every six weeks but now he's going every six months. His PC is always amazed when he sees Bryce because he is doing so well. He still has a feeding tube but fortunately his reflux is gone. He tries to eat but doesn't want to swallow.
I hope that Bryce's story give you hope. Just remember, every happens for a reason.
Story by Nicole, mom to Bryce - New York
COMMENT FROM LITTLE HEARTS: Please note that Bryce's diagnosis is different from just HLHS. The HLHS success rate is much higher than this diagnosis.