Brave Heart!

So most of you know that Bennett had open heart surgery at a very young age. But what you may not have known (unless you have a child with DS or you're in the medical profession), is that it is very common for kids with Down syndrome to have heart defects. Don't know why but it is. In fact, 40%-60% of infants with DS are born with a heart defect. However, most can be fixed with surgery or many may not require any surgery.

When we found out about Bennett having Down syndrome (through amniocentesis), we also found out that he had a heart defect (through a level II ultrasound) and most likely that it was an AV canal defect. Of course this was devastating at the time because we had no clue what it

meant.

Who are we kidding here? First of all, we had no clue about Down syndrome really, and throw a heart defect on top of that, well... let's just say we were in a very bad place emotionally.

Bennett did indeed have a Atrial Ventricular Septum Defect (AVSD or AV canal defect) which is the most common heart defect found in infants with Down syndrome and almost always requires surgery for survival {not usually immediately but eventually} . When this heart defect is seen on an ultrasound, it is a very hard marker for Down Syndrome- meaning, the chances are high that the child has DS. Of course babies can have an AV canal defect and not have DS but it's not extremely common.

Of course I went into research mode on the internet and found that his heart defect was very common among children with DS and it had a very high success rate with surgery. That did make me feel a lot better. It was still so scary, I mean REALLY scary but so many kids had it and were doing fine after surgery that I had to believe this would be our son as well.

So Bennett shares the exact same scar as many of his peers that have DS and it's kind of weird how it's just so expected and almost the "norm". Of course he has many friends with that extra chromosome that were not born with any heart defects too.

I have no idea why some are born with this and some aren't and I don't think it affects the way they develop either. Some kids with DS and a heart defect take longer to do things and some don't. Let's just say these kids are pretty resilient and for most, heart surgery is just another thing they have to overcome and they do!

Bennett's surgery was successful but sadly, as with any surgery, this has not been the outcome for all. And for those parents that lost their little ones at such a young age, during surgery or shortly after, I am heart broken, truly heart broken.

Ahh, that 21st chromosome has a way of pulling at your heart strings at so many different levels.