Meet the Founders: Abigail Wright
“Our story has a happy ending, but unfortunately many do not.”
In 2009, I was a newlywed on the way to taking the next big step in life: parenthood. We were totally ready and anxious to start our family. My biological clock was ticking and I read every article that I came across about preparing for pregnancy. I cut out caffeine, took prenatal vitamins and followed all of the other miscellaneous “advice” about gearing up for pregnancy.
Soon enough, I became pregnant and we were positively elated to be expecting our first child. My borderline obsessive reading shifted from reading about preparing for pregnancy and getting pregnant to how to have a healthy pregnancy and give your baby the best start in life. I was very conscientious about what I ate, drank and did. By nature, I’m not a rule breaker, so if there was a small risk to anything, I didn’t want to take it. I was actively seeking information about pregnancy in books, magazines and websites as well as tracking the stages of development of our baby. I never missed a prenatal appointment and felt I knew the types of things I should alert my doctor to.
Overall, I had a pretty normal, uneventful pregnancy. We discussed our hopes and dreams for our son as we felt him kick inside of me and thoughtfully decorated his nursery, anxiously awaiting his arrival.
I was blissfully unaware that I was sick with a horrible virus that I had never heard of, called CMV, which would affect my son. In hindsight, the only real symptom of CMV that I recall was being excessively fatigued.
Alexander was born at 39.5 weeks gestation and was absolutely perfect. I loved the labor and delivery process and experienced the kind of natural high from it that every woman hopes for. I was so energized and full of love and joy that if I could have, I would have done it all over again immediately. It was the greatest day of our lives at that point.
Before we left the hospital, Alexander failed the newborn hearing screen. The medical staff members were not concerned about it and assured us it was likely just fluid in his ears. I scheduled a repeat screening right away and proceeded to read about failed newborn hearing screenings. People we knew also shared stories with us of how their child had failed only to pass the next time. His pediatrician didn’t seem worried and after all the stories I had read and heard about babies failing hearing screens I was hopeful that Alex just had fluid in his ears but also nervous. I prayed harder for Alexander at that time than I had ever prayed in my whole life combined.
When Alexander was two weeks old, we found out that he is profoundly deaf in both ears. It was a shock and we were devastated. I had never personally known anyone who was deaf and I knew next to nothing about hearing loss. In the early days, I was absolutely overwhelmed at the thought of raising a child with special needs. Within the same week that we found out, we had experiences at two different drive-through restaurants where a deaf adult handed us our food out the window. We thought all of the hopes and dreams that we had for him went out the window. We were grieving.
We were fortunate to able to see a pediatric ENT who specialized in hearing loss shortly after Alex’s diagnosis of hearing loss. When he learned that there was no family history of hearing loss he suggested we test Alexander for CMV; sure enough, he tested positive. After all the reading I had done about pregnancy I had never heard of CMV. I scoured the web and found very limited information. When I learned how common CMV is, I was so angry that I had never heard of it, that I hadn’t been warned, that I hadn’t been tested. I was angry, overwhelmed, and depressed.
Fortunately, acceptance came relatively quickly for me. I found that the best thing I could do was to move forward and do whatever I could for Alexander. He was fit with hearing aids, we started early intervention and also started the process of getting cochlear implants.
Alex was what can only be described as delightful as an infant – he was happy, smiley and so engaged. He had a hard time meeting gross motor milestones within the “normal” range, but worked hard and reached all of them eventually with the help of physical therapy. Sometimes it was hard for me to see other kids his age reaching milestones at the expected time without any effort when Alex had to work so hard to do everything, but the effort it took increased my appreciation for every milestone that he reached.
His first year of life was filled with worry and uncertainty but we adored our beautiful son. We found that our hopes and dreams for him hadn’t actually been shattered at all; his path would just be slightly different than what we had expected it to be. Our expectations of him actually grew and we knew that Alexander would do great things in life.
Shortly after his first birthday, Alex received cochlear implants. Alex immediately took to hearing; he loved to hear new sounds and words! I could hardly believe it, but almost immediately he started to place meaning to words and objects. Over and over he would squeal with delight as I identified objects for him. His physical coordination also seemed to improve after he received cochlear implants. Within a few days of his activation, Alex attempted and mastered crawling up the stairs. By 22 months of age Alexander was finally able to walk independently.
The next few years were filled with a blur of appointments. Alex attended pre-school at the school for the deaf, received speech therapy, occupational therapy, hippo therapy (on a horse) and physical therapy. There were tears shed along the way out of frustration and joy; he worked so hard for every sound, word, step and milestone. Alex’s therapists became almost like family to us as we saw them so frequently and they truly understood what a big deal it was to us for Alex to reach each milestone, no matter how small.
Today, Alexander is age 5.5 years old and is a determined, brilliant, well adjusted, little boy that hears with cochlear implants, talks, sings, walks, runs, jumps and plays. Balance and coordination are still daily struggles, but we know Alex will continue to improve. The language gap due to Alex’s hearing loss has been closed and he attends mainstream school among his hearing peers. Alex has a strong desire to learn and amazes us every day with his curious intellect and sweet disposition; he lights up a room and will make a friend out of anyone. I am incredibly proud of him and can’t wait to see what he will accomplish in life.
CMV has caused profound hearing loss, sensory processing disorder, oral motor delays, gross motor delays and vestibular damage in Alex. I am grateful every day that Alex has only been mildly affected by CMV, as I know it could have taken so much more from him. Our story has a happy ending, but unfortunately many do not. I feel a moral obligation to try to prevent other families from experiencing the heartache that those affected by CMV have felt. I can’t reverse the effects of CMV on my son, but I can try my best to give other women the opportunity that I didn’t have, to have knowledge of CMV.
I am so honored and thrilled to be working arm in arm with the rest the National CMV Foundation team and I know together we can accomplish amazing things and create some real change in the world.
Category: Community, "Parent Perspective"