Heart Update

Heart defects are not uncommon with Down Syndrome. According to the CDC, around 50% of children with Down Syndrome have heart defects. That’s a scary percentage. Flip a coin and your child will either have it or they won’t. Having a child with Down syndrome is one thing but add a heart defect and that in itself is its own journey.

I remember vividly early in my pregnancy going to the hospital for the fetal echocardiogram. It was only six or seven weeks earlier that I had found out that the baby had Down syndrome. Now I was going to find out if the baby I was carrying was going to be among the half of children with Down syndrome that have heart defects. And if she did, how bad was it and how would it affect her quality of life? We were hoping for the best but preparing ourselves for the worst. Was the baby’s heart going to be in such bad shape that we would have to make a decision regarding termination?

We were relieved to find out that day that the baby’s heart looked very good. Doctors are never certain with prenatal imaging, but at the very worst it looked like she had a small hole, a VSD (ventricular septal defect), that would be fixable. The cardiologist said her was “suspicious” but not quite convinced. When Gigi was born we found out that she didn’t even have a VSD but instead she had a small hole called a PDA (patent ductant arteriosis) and then a small PFO (patent foramen ovale). Both holes that in most cases heal themselves.

At seven months we found out that her PDA had closed but her PFO got a little bit bigger, five millimeters, and was called an ASD (atrial septal defect). This would require surgery when she was about three or four  years of age but wouldn’t harm her in the short term, only in the long run if it wasn’t fixed. She was given a 20% chance that this hole would get smaller or close on its own.

Then on Thursday, a year since her last echo, Gigi had another echocardiogram which to our surprise showed that her ASD has gone from 5 millimeters to 3 millimeters. At 3 millimeters no intervention is required. It looks like we got lucky and her heart is healing itself.

The bottom line is Gigi is one of those statistics of children with Down Syndrome that have congenital heart defects but not all heart defects are devastating. That’s good news. We have many friends who were born with holes in their hearts that are closing on their own. We also have many friends that are heart warriors and have been through major open heart surgery. Thank goodness because of today’s science they are doing very well. It was only as recently as the 1980’s that, on average, people with Down Syndrome did not live beyond their twenties. Much of this was due to congenital heart defects. Thankfully now they are living well into their sixties thanks to the many medical advancements that have been made.

Last year when the doctor was talking surgery with me she said she didn’t want to talk too much because surgery would be three years down the road and these days devices and procedures are constantly changing and being improved in cardiology. She said that what is being done today could very well be different from what will be done in a few years. So it is apparent that procedures and devices in cardiology are continually improving for children with Down syndrome.

We have not been officially released from the cardiologist but we do not have to see her again for another few years. And we are thankful that Gigi’s heart is well.

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