When we first found out that there was a chance Kendall was going to have Down syndrome and I spent my two weeks over Christmas break reading, I learned about all of the potential health concerns that come with it, some of which become more prominent with age. About half of all children born with DS are born with some type of heart defect. There is an increased risk of leukemia, sleep apnea, obesity, dementia, gastrointestinal issues, thyroid problems, hearing loss and poor vision. With heart defects being the most immediate concern, we were told that we would have monthly ultrasounds throughout the pregnancy and a 2 hour fetal echo cardiogram to focus strictly on the heart. Often times babies born with DS require heart surgery, many within the first few months of life. The fetal echo would help the medical team caring for Kendall understand what obstacles we might be facing upon delivery.
Kendall failed all of his newborn hearing screening while we were in the hospital so we were referred to an audiologist for a full hearing test. This took place at the UNC Hearing Center on July 27th, at 7 weeks old. When the appointment was booked my pre-appointment instructions were to not feed him that morning so he would come in angry and hungry. He had to be asleep for the entire test so I would need to feed him right before it started to try and keep him asleep. The test took 4 hours. Yes, 4 hours. I had to sit in a chair, holding him while he was electroded up (yes, I made that word up) and had mini headphones in his tiny ears. If the headphones came out or if he unhooked one of his electrodes, the test had to be paused and couldn't resume until he was asleep and still again.