Shea’s Story

By: Rachel Oldenburger

Rachel is an energetic, intelligent compassionate teacher with an ever-present smile for the kids. She is also a mother who has gone through hell and back. It often amazes me how little I know about the personal struggles of people I see often. It is easy to get lost in our own problems, and forget each of us has crosses to bear. This is the story of Rachel and her son Shea who was diagnosed with a Congenital Heart Defect before he was even born. Warning: The story of Shea’s heart will touch yours.

My husband, Jake, 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, otherwise known as Congenital Heart Defect, or CHD. 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 (Ventricular Septal Defect or a hole in the heart), and interrupted inferior vena cava. He had his first open heart surgery when he was four days old. He did so well in recovery that he came home after only 16 days of recovery.

Shea was monitored very closely for the next five 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!

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. Looking at Shea, you would never know he has been through the struggles he has. He is the happiest, funniest boy. He loves his dog, Breck, and “barking” out the window with her. His favorite thing to do is walk to the park and swing on the swings. He loves to throw his toys and swing his plastic baseball bat when we yell, “Homerun!” His favorite food is mac and cheese and his favorite color is red, like his heart! Shea’s zipline scar is a constant reminder of his immense strength and resilience. Shea has had to fight his whole life, and is a true Heart Warrior. If you asked me before I had a baby what lesson I would want to teach my children, it would be to never give up and always fight for the ones you love. Little did I know, I would have a baby who would teach all of that to me.

What is Congenital Heart Disease?

CHD is the most common birth defect. It affects 1 in 100 infants, and is the leading cause of birth related infant deaths. It’s 60 times more prevalent than childhood cancer, yet it’s grossly underfunded. The silver lining in all of what Shea and I have gone through is that we have been able to spread awareness about CHD and help raise funds to help medical research efforts and for transitional care of the ever growing population of CHD adults. For the first time in history, 50% of people with CHD in America are adults, but their proper care requires more funding. Please consider donating to The Babies Heart Fund at Columbia Medical Center or the CHD Coalition to help our efforts and make a difference in the lives of children born with CHD.