It’s CHD Awareness Week – Let’s Celebrate our Heart Heroes in the Ds Community

We can’t let #CHDAwarenessWeek go by without acknowledging all our #HeartWarriors! Did you know that about 50% of infants with Down syndrome have some form of heart condition? Let’s celebrate our #HeartHeroes in the Ds Community – share an extra hug with your #CHDWarrior today!

Here are stories from two of our own Heart Heroes:

Ellie Parnell: Ellie’s new valentine’s pj’s are perfect for heart week!

“We knew before Ellie was born that she had a heart defect that would require surgery maybe right away..we were able to wait. We had to see her cardiologist every month and each month he would say, well everything looks great no need for surgery yet. I would always ask if there was a chance she wouldn’t need surgery at all hoping the months we waited that the severe hole in the middle of her heart would close on its own..but he said there was no chance of that happening. But for some reason, I still hoped and prayed. They had said around 6 months old is when she would need surgery, well 6 months came and went..then 7..8..9..and then at 10 months the time we had dreaded and prayed wouldn’t happen was here. At that appointment, I asked her Dr why does she have to have it? She has gone 10 months already…why now? Thinking maybe she really didn’t need it and that it would heal itself, but he told me that Ellie’s heart was broken and she wouldn’t survive unless she had surgery to fix it. So we had no choice but to hand our baby off to surgeons putting her life in their hands…I don’t like to think about that time…when I handed her off I knew that it could be the last time I saw my baby…but I had to anyway because without it she wouldn’t live. Nothing can prepare you for it. Sometimes I almost forget that it happened but I am reminded every day by the faded scar on her chest. She is a fighter and survivor and my inspiration! My love for her is never-ending..she is my sunshine!”

Allen Norton: “More than 50% of babies with Down syndrome are born with a heart defect, and the most common type is an AVSD. Allen’s heart defect, which was also an AVSD, was detected on an ultrasound when I was 16 weeks pregnant and that is why we decided to do further testing to find out that he would have Down syndrome

Allen had open heart surgery at just 9 months old to repair his heart defect and we are forever grateful for the wonderful cardiology/heart surgeon team at Norton Children’s!”


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