4 Facts About Heart Defects In Kids With Down Syndrome

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I see kids diagnosed with congenital heart defects (CHD) every day. And one thing I see frequently is CHD in kids with Down syndrome.

Most people are born with 23 pairs of chromosomes, and Down syndrome occurs when someone is born with an extra copy of chromosome 21. CHD and Down syndrome often go hand-in-hand—about half of all kids with Down syndrome also have a heart defect.

Here are 4 important things for parents to know about CHD and Down syndrome.

1. What’s The Most Common Type Of Defect In Kids With Down Syndrome?

Kids with Down syndrome can have any type of heart defect. According to the National Down Syndrome Society (NDSS), atrioventricular septal defect, or AVSD, is the most common heart defect in kids with Down syndrome.

The heart has four chambers that work together to pump blood through the heart and body. The top two are called the atria, and the bottom two are called the ventricles. Between both atria and both ventricles are walls called septums. When your child has AVSD, he has an opening in the septums.

The National Association for Child Development explains that AVSD causes too much blood to flow into the lungs, as well as making your child’s heart work a little harder than it’s supposed to.

2. Don’t Panic If Your Child Needs Surgery.

Many kids with CHD need surgery, which I know can be scary for both kids and parents. But I have very good news: Down syndrome does not make heart surgery any riskier. In fact, a recent study published in the journal of the American Heart Association found that kids with Down syndrome might actually have an increased chance of survival.

3. Satisfy The Need To Feed.

Getting your little one to eat enough can be tricky if she has CHD and Down syndrome.

Heart kiddos often have feeding problems, which can lead to things like poor dental health or not being able to gain weight. And unfortunately, feeding problems are also common in kids with Down syndrome, according to the SPOON Foundation.

I know it can be difficult, but I cannot stress enough how important it is to make sure your child is getting enough to eat. Her heart works extra hard, so she might need extra calories to keep up that hard work. And if she doesn’t eat enough to gain weight, she might not reach her growth potential for height and weight later in life.

 kids with down syndrome

If your child continues to struggle to eat, an NG tube or G-button may be recommended by your child’s care team to help ensure she received adequate nutrition.

4. Get Plenty Of Zzz’s.

I encourage parents to make sure their child develops healthy sleep patterns, since getting plenty of sleep is very important for heart kiddos. Lack of sleep can weaken the immune system—and many heart kids already have weak immune systems, especially if they just received a heart transplant.

According to the National Down Syndrome Society, children with Down syndrome often develop sleep apnea. Apnea doesn’t just mean kids don’t get enough sleep—it also raises the risk of high blood pressure or heart failure.

I recommend looking at the National Sleep Foundation’s guidelines for the amount of sleep kids need at different ages. If your child is having trouble sleeping, try these tips:

  • Set a bedtime, and stick to it.
  • Keep him away from TV or computer screens at least an hour before bedtime.
  • Ask the pediatrician if your child can take a natural sleep aid like melatonin.

Please share your thoughts in the comments below.

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Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

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