Wednesday, October 12, 2011

Heart Heroes

I was recently asked, do children with Down Syndrome typically have heart defects?

Well, it is pretty common in children with Down Syndrome. In fact about 50% of these kiddos are heart heroes. In their typical peers, heart defects are present in about 1% of the population.

The most common heart defect seen in infants with Down syndrome is an atrioventrucular septal defect, or AV canal (What Miss O conquered). Other heart defects seen in infants with Down syndrome include ventricular septal defects (VSD), atrial septal defects (ASD), and patent ductus arteriosus (PDA).

Some kiddos may have a heart defect, but it may not require surgery. It's not entirely uncommon for an ASD for a VSD to grow closed & often it's closely monitored by their cardiologist. Sometimes it may take a year, sometimes they don't have surgery until they are older. Some kids may have to have multiple surgeries - fingers crossed that Ollie is done.

Ollie Faith had an AV Canal which means she had a hole between her atriums, a hole between her ventricles, and a common valve - basically a hole in the center of her heart. This type of defect usually always requires open heart surgery. They told us she had a very small chance of these holes growing shut on their own. Of course each kiddos heart and makeup is different. Ollie had a moderate ASD and significant VSD so they were pretty substantial holes.

Ollie went in at 10 pounds 5 ounces at 4 months for her correction. Some kiddos are larger & longer making their anatomy easier to operate on, and some are shorter and smaller making it more difficult, but at the same time their unique anatomy can vary the difficulty of the surgery as well. For Ollie's type of correction, they told us they typically operate between 3-6 months of age. Any longer could potentially damage the babies lungs long term because their heart defect pumps extra blood to their lungs prior to surgery.

What was key for us was finding a cardiologist and hospital we were comfortable with. We went to St. Louis which is closest to our home, and we were very happy with our cardiologist and our surgeon. Since St. Louis has a Down Syndrome clinic the surgery Ollie had wasn't uncommon for them. Our surgeon performs about 15 of them a year - that number wasn't as high as we had hoped - we were hoping it was a weekly operation for him, but he was very confidant in his abilities. Ollie's chances for survival were 99%.

On top of heart defects children with Down Syndrome can face many other health issues...however I'm not going to dump them all out here because honestly that list is depressing & scary - especially to any new parent that may read my blog.

I can tell them that modern day medicine is amazing & to find a hospital and staff that you feel absolutely secure with because it will make the process a little easier to bear.


  1. Thanks for the info. Are heart defects more common in girls? It seems like it is.

  2. To Rebecca (above) - I'd not heard that, and I do know plenty of boys who have also had defects. Interesting...

    Great post, Annie. We went with our local cardiologist's recommendation of having Sammi's surgery either at Boston Children's or Children's Hospital of Philadelphia (CHOP), and since I'm from the Philly area we chose CHOP. We totally didn't mind being so far from home for it, if it meant that her surgical team and care would be the BEST. :-)

  3. YO. I'm visiting from your mom's blog, which WAS AWESOME with Trudie's hilarious face. I can tell she's really into you (the dog) (but probably also your mom).
    I think your daughter is ADORABLE, and I'm so glad she had a successful surgery. :)

  4. Today on the "Doctors" I caught the end of a piece of plastic eye surgery a lot of asians want, then they went on to say how some parents want eye surgery for there children with down syndrome to help with the stigma they already have.. Good grief I though you might like to check out the piece and discuss it on your blog.

    love the pick with Ollie holding her painted toes.



Thank you so much for your kind words & support! I love hearing from you & read each and every comment you leave for me! ~Annie


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