Bryce todayThe scariest thing you can tell a pregnant woman is that there's something wrong with their baby. Hands down. Nothing is worse. But Nicole Rogerson didn't just learn something was wrong. Doctors said her son should have surgery while he was still inside her belly!
Bryce Rogerson has hypoplastic left heart syndrome (HLHS), a congenital heart defect, and doctors told his mom that they would need to sticking a needle into her stomach, temporarily paralyzing her fetus. Then they would move into his heart to open up a hole to help blood flow through his tiny body. Yikes!
Nicole Rogerson is an old friend. But the real reason she agreed to share her story with The Stir this month is because she spends every minute she's not with her husband and three kids or at work talking about spreading awareness that congenital heart defects are the most common type of major birth defect. In particular, HLHS -- a syndrome in which the left side of a child's heart was underdeveloped -- is one of the three most common heart issues a child can be born with, and great strides are being made to keep those kids alive.
The in utero surgery Bryce underwent debuted at Children's Hospital of Boston in 2001, and doctors there have done 111 since. Bryce was their 44th and the 11th to have the atrial septum dilated. There were 10 kids surviving at the time. Having just turned 6 this week, Bryce is the oldest living survivor of those 10.
Set the scene for us Nicole, when did you find our Bryce had HLHS?
At 22 weeks pregnant. It was with a routine ultrasound, and then I went to a pediatric cardiologist at 24 weeks for a fetal echocardiogram.
What did the doctors tell you?
Our first question was what experimental stuff is out there? They said fetal surgery, but they didn't do it, they suggested we go up to Children's Hospital in Boston.
His survival rate, they told us, would go from 20 percent to 40 percent with the surgery. Most hypoplas babies will compensate for the problems in the left ventricle by creating an atrial septal defect -- a hole in the heart to let blood flow. Bryce didn't, so that's what they needed to do, go in and create a hole by putting a balloon in his heart, blowing it up and cutting a hole 2 millimeters wide.
You had to be scared.
It was not a hard decision for us to make. We felt if this kid makes it, we're going to do everything we can to help him make it. If he didn't make it, whatever information they got from him would help the next person.
Was there a risk to Bryce or a risk to you with the surgery?
The only risk to Bryce was going into pre-term labor. They do give you drugs to stop that, but they're going into your uterus. It's more invasive than an amniocentesis, but not that much difference.
So how did it work?
At 26 1/2 weeks pregnant, they put me under. At the time, his heart was the size of a grape. They gave him a paralytic, a shot in his leg, so he wouldn't move. It took longer to get him into the right position than it did to do the surgery. They took two and a half hours to get him where they wanted him, but the actual procedure was 15 minutes.
Then we waited until I delivered. I went full term. Well, 37 1/2 weeks because I had to be [at Children's Hospital]. I was induced. But if we hadn't had the fetal surgery, he wouldn't have made it. The hole they created, by the time he was born, it had already closed itself. His blood couldn't get oxygen. Within 45 minutes of being born, he was brought into the catheterization lab.
Did you ever think this was just too much, it wouldn't work out?
As a parent, I never, ever, ever did. My gut instinct as a mom, I was never afraid he was going to die. I don't know if it was the faith in the doctors or what.
Bryce's fight isn't over. In the past 6 years, he's had three open heart surgeries. His lungs have taken the brunt of a heart that can't properly oxygenate blood. But otherwise, he's a normal kindergartner who loves the New York Yankees and the Imagination Movers.
You can find out more about congenital heart defects like Bryce's -- including signs and symptoms -- at the National Heart Lung and Blood Institute. Do you know one of the 8 out of every 1,000 newborns who has one?
Image via Nicole Rogerson