March 3, 2012

3:21 Day 3

So, a Down Syndrome fact that is near and dear to our hearts (heh) here at the Norton household:

Children with Down syndrome are at a much higher risk for congenital heart disease. As a comparison: the incidence of congenital heart disease in the general population is 0.8 percent. The incidence of congenital heart disease in children with Down syndrome is between 40-60 percent. -DSNACD

Samuel was born with AVSDAtrioventricular Septal Defect (A phrase that took me a good two months to master saying without stumbling over it. I didn't even have to Google it to spell it just now. I know that's not impressive to you, but there was a time when I never thought I'd be able to wrap my brain around those 3 words, let alone spell them. So. Progress.). It became apparent about an hour after he was born that he had an issue with his heart when he became cyanotic on his way to the nursery. (Here and here are the posts about his birth.) That combined with some of physical indicators of Down Syndrome, like his bent ears, his low muscle tone, and the Palmar Crease on his hand, led them to do the genetic testing. 
Both Sam and I have a Palmar's Crease on our left hands, so while it often appears on children with DS, it also occurs in 10% of the non-DS population as well.

His heart defect is one that is fairly common in the Down Syndrome population. About 50 percent of the children with DS that have a heart condition have AVSD. Samuel also had the double whammy of having PDA, which meant we had to do his AV canal repair sooner than expected so that it wouldn't cause permanent damage to his lungs. If you want to read about our journey through his AVSD/PDA repair and the 24 days we spent in the ICU, click on the Heart label on the right sidebar. (While we have physically put some space between us and those days we spent in the hospital, I haven't gone back to read much of what I wrote during that time. It was such a rollercoaster of emotions, and honestly, it's kind of painful to go back and read those days when I was so hopeful that we would make it out without a pacemaker. So, all I'm saying, really, is cut me some slack on the lack of editing. I'll go back one day and clean it all up.)


Want to see what a baby looks like after two major heart surgeries? 



Still pretty dang cute, right?

Here is where/why he has each scar:

The largest scar at top labeled AVSD repair was actually opened for both surgeries. However, during the pacemaker surgery, they didn't have to cut through his sternum again, so it was able to heal on track with the initial AVSD recovery. His pacemaker is actually located behind his abdominal wall, but the arrow points to its general location. You can kind of see the outline of it in the picture above where he is stretched out. It's bigger than you think it is. 

Physically, Samuel rebounded very well from both surgeries. Within a few months, he showed no discomfort over any of it. His sternum is actually very prominent right now, but our cardiologist says that it will probably flatten back out again as he gets older. The other incisions have healed nicely, and the smaller ones are hardly noticeable anymore.

Samuel's surgery was not a typical one in that it necessitated a pacemaker, but I'm saving that story for another day.

So, while families and children with Down Syndrome deal with a host of challenges, about half of them are also dealing with very serious heart conditions. This is ours.

Remember, check out NDSS or DSI for more information about World Down Syndrome Day!

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