Friday, February 5, 2016

#CHDAware – CHD Awareness Week 2016

Congenital Heart Disease Awareness Week:

February 7-14

Click Here to Donate!

  • Nearly 1 in 100 babies are born with a CHD.
  • There is no cure for CHD. Congenital Heart Disease requires life-long medical care.
  • Approximately 25% of children born with CHD will need life-saving intervention as infants.

Did you know heart defects are the most common birth defect?
I had no idea.

Last December my sister-in-law found out her baby had not one heart defect, but three! His heart was backwards and on the wrong side of his chest, doctors couldn't see all of the chambers of the heart. I don't know how she kept things together. I can only imagine. Sometimes we do things because giving up just isn't an option. She was determined to not give up on her child, no matter what! Doctors told her he would be slow developmentally and his chances of survival weren't good. I'm happy to report, he's proven them wrong! Uriah is a heart hero and continues to amaze his physicians and everyone he meets! We're all so happy!
Heart defects are costly- Hospital costs for children with CHD exceeded $5.6 Billion in 2009.
Estimates suggest there are more than 3 million people living with Congenital Heart Disease (CHD). 

My nephew, who hadn't come into the world yet, would need a series of open heart surgeries to "fix" his heart. Uriah Michael came into this world at Boston Children's Hospital. He was only four days old at his first open heart surgery, a procedure called the Norwood. He has had numerous Heart Catheters and is on a daily regimen of medications multiple times a day to help manage his CHDs (Hypoplastic Left Heart Syndrome or HLHS, Dextrocardia, and Heterotaxy). He had his second open heart surgery, the Glenn in Boston at 3.5 months.

Uriah with Dr. Pigula his amazing surgeon.
If it weren't for his family, the amazing doctors, nurses and staff at Boston Children's Hospital my Uriah and others with CHD wouldn't have a chance. We are so thankful for them and all they do! 

Uriah is 9 months old now and has brought so many people together. Through the pain he endures he is the happiest baby I've seen. He is a ray of sunshine with one of the biggest smiles and a giggle that draws people to him.

Uriah is my #HeartHero!
Donating is as easy as sending a text and every little bit helps. If do not donate because you haven't been asked, consider yourself asked. Trust me when I say this, your donations are appreciated by every family who has a loved one with Congenital Heart Disease. There are many who survive surgeries, and endure blood transfusions, medically-induced comas, heart catheters and complications.

Please Consider Donating!
Sadly not all live to adulthood. There are a few children who have joined Uriah's online community and who were born around the same time who lost their battles with CHD.

We should all appreciate life in all its forms, appreciate our friends and family. Please, don't take anyone in your life for granted even for a minute.

If you would like to follow Uriah and his family on their journey you can join his Facebook community: Mending a Broken Heart for Baby Uriah

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