We are walking on Sunday, October 1st to support the effort of the Congenital Heart Defect Coalition and their quest to help those affected by CHD. We would love for you to walk besides us and/or consider making a donation (no amount is too small) to support our efforts. We hope that these efforts will help provide treatment and find a cure for CHD.
My husband and I were so excited to find out we were having our first baby. We went for my 20 week ultrasound and after lots of moving and readjusting, the ultrasound technician went to get the doctor. After a 30 minute wait, the doctor returned and informed us that our baby had a complex series of heart defects. We rushed to a pediatric cardiologist who confirmed the diagnosis.
The next day we went to Morgan Stanley Children’s Hospital at Columbia NYP where we began our heart journey. Shea Noah was born on February 27, 2016 with hypoplastic right ventricle and tricuspid valve, aortic atresia, VSD, and interrupted IVC. He had his first open heart surgery when he was four days old and did so well in recovery that he came home after only 16 days in the NICU.
Shea was monitored very closely for the next 5 weeks, until he displayed lower oxygen levels and was eating less. Due to the quick intervention at Columbia NYP, it was determined that his aortic arch repair was clogged with scar tissue, reducing his aorta to the size of a pin hole and barely allowing blood to pass. He had a heart catheterization the day after his 2-month birthday, where the doctor inflated a balloon in his aorta to stretch it out and allow more blood to pass. This fix worked for 3 more months.
On Shea’s 5-month birthday he had his second open heart surgery. Although he recovered quickly, this surgery came with many complications. Shea’s vocal cord needed to be moved during surgery because of it’s proximity to the heart, resulting in vocal cord paralysis. He developed a blood clot from the central IV line that was inserted to administer medications. He got a Strep blood infection, and a Staph wound infection. All of these complications resolved themselves, and now Shea is completely recovered from this surgery!
Shea needs one more open heart surgery when he is around 4 years old. He is now thriving due to the incredible care from Morgan Stanley Children’s Hospital at Columbia NYP. He loves to swing his baseball bat and play with his puppy. This journey hasn’t been easy, but we wouldn’t trade it for anything in the world.
Congenital Heart Defects (CHDs) are the # 1 birth defect worldwide. Nearly one of every 100 babies is born with a CHD. Congenital Heart Defects are the leading cause of all infant deaths in the United States. There are more than 40 types of congenital heart defects. Little is known about the cause of most of them, and there is no prevention or cure for any of them. As you can see, congenital heart defects are common and deadly, yet CHD research is grossly underfunded relative to the prevalence of the disease. With your help, we can help change these frightening statistics. Don't miss this opportunity to help us impact the CHD community to bring awareness to the #1 birth defect, and to fund groundbreaking research with the potential to save a life of a child. Together we can bring hope to families in times of despair and helplessness and work towards eradicating CHD!
We thank you for your ongoing support. We could not have made it this far without the support and comfort of our family and friends.
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