Noah Kiefer

 
 
 

Noah was born on August 26, 2013 at Gwinnett Medical Center in Lawrenceville. He was born at 37 weeks and then taken to the NICU where he spent several days there for observation. While in the NICU, Noah was diagnosed with Down Syndrome and the night prior to his scheduled discharge, a new nurse to his care was giving him a bath. She could tell Noah was having problems with breathing and she could hear something wrong with his heart. The next day, Noah had his first echocardiogram and the doctors found a hole in his heart. Holes are considered Congenital Heart Defect and a trait of Down Syndrome. Later Noah was diagnosed by a Pediatric Cardiologist with a VSD (Ventricular Septal Defect), Partial AV Canal (Atrioventricular) and Aortic Arch Hypoplasia. Noah had to spend a few more days in the NICU before being discharged so they could monitor his heart. When discharged from the NICU, Noah had to continue to be monitored by the Cardiologist because we were told Noah would need to have open heart surgery when he was 6 months old.

At the end of November 2013, when he was only 5 month old, we started our time at Children’s Healthcare of Atlanta. This is when Noah started to show signs of heart failure. Noah’s heart surgery to repair the hole, went from waiting till he was 6 months old to being moved to mid-December. The first visit was only an overnight visit. But we were back at CHOA a week later because Noah was not earring and was having more problems breathing. He was admitted into CHOA’s Cardiac Step-down Unit until his scheduled surgery a week later, but an hour into Noah’s stay we were told there was an opening in the schedule for the next day. December 4 th is Noah’s Heart Anniversary because they repaired his VSD.

This did not end our time with CHOA. About two months after healing from his heart surgery, Noah started going to CHOA – Rehabilitations Services to receive Occupational, Physical and Speech therapy. After almost 6 years, Noah graduated from Physical Therapy but he continued to attend Occupational and Speech Therapy weekly. In 2021, Noah’s time with rehabilitation services ended.

Since Noah’s heart surgery, he has had five other surgeries and several overnight stays at CHOA. Noah continues to see specialists at CHOA and will continue to go there till he is an adult. Noah does not look like a child with Down Syndrome, but he does not allow anything to hold him back. He loves to play sports, dance, horseplay with his siblings and run around whenever he can.