On 10/11/2004, in the front seat of our car in route to the hospital, my son Noah was delivered by his dad. On site he looked like any other healthy 8 lb. newborn. His pediatrician, after consultation with an infectious disease doctor, decided to test Noah for Congenital CMV immediately after his birth. This decision was made because on Noah's routine 20 week sonogram an "echogenic bowel" (bright spots on his bowel) was seen. The doctor I was seeing that day decided to run a TORCH screen blood test. This TORCH screen showed that I had been exposed to a primary infection of the Cytomegalovirus. Congenital CMV causes the most damage to babies whose mothers contract it for the first time while pregnant. I never knew that because I had a toddler in daycare, that I was at a greater risk for exposure. In some ways I was lucky. Without that blood test, we would not have known that I had been exposed to CMV as a primary infection and we would not have known to run the urine test on Noah when he was born.
That positive result set in motion a string of events and opportunities Noah would not have had, if we had not known he was CMV positive, even later on. We were approached by the pediatric infectious disease team about a new study they were initiating on an oral anti-viral medication for Congenital CMV. Noah was one of the first babies nationwide in this study. The purpose of the study was to see if the medication would be effective in reducing the progression of hearing loss, which is a trademark result of the virus.
Noah was moved to the NICU and given a spinal tap to test for CMV, brain scans, MRI's and hearing tests. The tests did reveal a hearing loss, calcifications in his brain, and other brain abnormalities.
We spent the next 3 1/2 weeks trying to spend as much time with Noah in the NICU, without feeling like we were neglecting his big sister at home who did not understand why her new brother was not coming home from the hospital. We dealt with physicians who had already written him off. Imagine having a neurologist tell you that your 10 day old baby would never walk, talk, or do anything beyond a newborn level. Every time Noah accomplishes something that I was told he would never do, I think of that day, and I am so thankful that Noah was not listening to him.
Immediately following his birth, and even currently, Noah’s schedule was overloaded with therapies and activities. The years have brought many ups and downs. Noah has battled microcephaly, global developmental delays, cerebral palsy, right hemiparesis, and hearing loss (wears bi lateral hearing aids). Through feeding therapy and with the help of nutritionists we fought feeding issues. He didn’t walk until he was almost 2 ½ and his right side is much weaker than his left. He had his first grand mal seizure when he was two years old. I can tell you that as a parent that was the most terrifying moment I have ever experienced. It doesn’t get easier. We are very lucky that the medication works and his seizures now are infrequent.
Noah has taught all of us the true meaning of life and what is important. He has to overcome so much every day to do the things we take for granted. He never complains and is always smiling. Noah has an amazing relationship with his older sister (now 13). She never complains about the attention he requires and even when she was little was always a “competing mommy”. Noah has always had boundless energy and a motivation to accomplish whatever he wants to. Noah has never known the meaning of "can't." His therapists have always stated that his motivation and determination have been integral to his progress. Last weekend, Noah started his day playing in his challenger baseball game. His daddy is director of the program, and Noah refused to let him help him. Wanting to hit the ball “all by himself”! A phrase I am constantly hearing now. Every time he ran a base he would look over to make sure his entourage was cheering. His entourage included two sets of grandparents, mommy and his big sister. From there we ran to hockey. It is his third year playing special needs ice hockey. Honestly, the first season I refused to watch. Was my husband serious! My son with cerebral palsy was on ice skates. I thought my nerves would explode every time he fell. Noah LOVES it. This year is the first year he is not pushing a chair (he still loves the rides they give him). Now he holds one end of his hockey stick and someone holds the other. He is even starting to move his feet. From there it is off to track practice. He ran his first one mile race a few weeks ago, with the help of his buddy. I can tell you I was absolutely exhausted the end of that day. Not Noah.
Noah is always happy, smiling or singing (unfortunately singing old Hanna Montana songs). I have often looked over in the rear view mirror at him in the back seat, while in the car. I am easily overcome with emotion as I see him smiling. Noah is so blessed with the ability to experience pure joy at all times.
People can't help but smile at Noah, his energy, excitement, and his joy for life is absolutely contagious. It is my hope that by sharing our story, we can spread awareness of this terrible virus.
--Shared by his mother, Lynn
Posted: 4/10/2016 1:35:00 PM