Corbin’s Story: William’s Syndrome and CHD, Detected After Birth

Hardly a day goes by that I don’t read of another sweet baby lost to congenital heart defects. On most days, I read about a baby detected too late, or one that pulse ox might have helped. Corbin is one of those babies, and he’s so much more. His mother is an incredible advocate, and friend.

When I first got pregnant, I had never heard about heart defects and how they affected 1 in 100 babies. I didn’t know they are the most common defect in newborns. I also didn’t know there was a way to help detect heart defects, called pulse ox.

Now I know. I know a lot about heart defects and I want to share what I know.

February 20th, 2011 I gave birth via C-section to a tiny, wrinkled, little boy named Corbin. He looked like a little old man but I loved him instantly. We had no clue to the hardships he would endure for the next three months as he fought for his life. Corbin had an interrupted aortic arch, ASD’s and VSD’s (which are basically holes in the heart), double outlet right ventricle (problems with the structure of the heart), and aortic and pulmonary stenosis (narrow veins). All of this was caused by Williams Syndrome, (www.williams-syndrome.org.) a genetic disorder presented at birth where one tiny little section of one gene is deleted. It messes with the elastin which is why many Williams Syndrome kids have heart problems. Corbin’s defects were pretty significant, and the doctors had a heart time deciding what kind of procedure would be best.

Corbin underwent three heart surgeries to try and fix his heart. He was an amazing fighter and I am so proud of him. He touched a lot of people while he was in the hospital and there were many tears the day he passed away. His room wasn’t just full of doctors and nurses, but of people that cared for and loved my little boy.

I am still grieving, in my own way. It has only been two months since he was taken to Heaven, but every day I make it my mission to spread awareness of heart defects and pulse ox. I want to reach as many people as I can so that every mother will know what it means if her babies hands and feet turn blue. Or if their child is breathing heavily and can’t nurse and breath at the same time. I just want to plant that little seed of knowledge so that when someone needs it, they will remember “pulse ox” and they can ask for help.

Thousands of babies are born each day. Some of them will have Down syndrome, some will have autism, and some will have heart defects. It is possible. It does happen. And it is common.

Sometimes I feel like I’m talking to myself, that other people aren’t listening. Then I receive a message from a mother asking about pulse ox. They tell me they are pregnant and their child may have heart defects and they don’t know what to do. In those moments, Corbin is with me. He is helping to save other lives and that makes me so happy. My baby did not die in vain. No, he died with a purpose. He is saving lives and I am so proud that he is making a difference. So no matter how many people read this, it will reach that one person who needs it the most. They will read that pulse ox is a cheap, non-invasive test that can save their babies life and they will do something about it. Whether they simply repost and share or they tell their friend or sister that is expecting. Some way the word will be passed and THAT, my friends, is what this is about. Share and be aware!

If you would like to help, please visit this page to find a pulse ox advocate near you!

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