We have two boys: Liam, born in 2012, and Nathan, who was born in 2015.
My pregnancy with Liam was healthy, and fairly typical. I have Type 1 diabetes and my kids tend to be a little on the large side. Nonetheless, Liam was born at 39 weeks, about 10 ½ pounds and healthy. We took him home the next day.
Nathan has a different story. Due to my diabetes, we were already being monitored closely with many ultrasounds and tons of appointments. Everything looked perfect! At 30 weeks, I bent down to pick up a fork from my kitchen floor, and my water broke. The next morning, we were transferred to Denver, an hour away from my husband and my then two-year-old. I was placed on hospital bedrest to give Nathan more time to develop, and he was born via C-section four weeks later. At 34 weeks, he was 6lbs 7oz and perfect! He needed help breathing, eating, and quite a bit of time under the lights to help his bilirubin levels rise.
A New Diagnosis
When he was two days old, one of the nurses came in to tell me that they had tested my placenta for cytomegalovirus (CMV) because my water had ruptured so early. The test was positive, and now they wanted to test Nathan because of that positive result. The nurse told me not to worry; he showed no apparent signs of CMV and they did not expect his results to come back positive. I had never heard of CMV before.
The next day two doctors came in and told me he tested positive. I had no idea what that meant. They did a whole array of tests, including a hearing screening, and he passed them all. At one point, the staff was going to follow infection control precautions (wearing masks/gloves and gowns whenever they entered his room) but they never did. No one in the NICU really seemed to know much about CMV or what precautions to take. We were told that someone would be talking to us about it. No one ever did, and we were so overwhelmed, we didn’t push for it. When he was 54 days old, we FINALLY got to go home. He had one last hearing screening, which he again passed. They told us to follow up with an audiologist when he was six months old for another hearing test. And that was it. What I have learned about CMV since essentially came later through my own research and our pediatrician’s recommendation to seek out an Infectious Disease Specialist.
Life began to return to normal (as normal as it can be with two little boys). When Nathan was six months old, we saw an audiologist. They did a booth test and he didn’t respond the way they wanted, so they asked us to come back in three months to try again. Nathan happened to have a surgery scheduled in three weeks, so I pushed to have an ABR done at the same time. We were lucky that they could squeeze us into the OR schedule.
The Next Step: ABR
We spent those three weeks watching him, noticing how he slept through everything. We happened to be moving to a new house, and he would sleep through his screaming three-year-old brother, ladders coming down, plates braking, and all kinds of noises. I started to question his hearing. Surgery day came, and his surgery went great. They said the ABR was getting started and the audiologist would be out in about an hour to let us know. After two hours, we were taken into a room for a meeting with the audiologist, and we were told he had profound hearing loss in his left ear, and severe to profound loss in his right. I cried. My husband sat there, numb, not knowing what to say. Through my tears, I immediately asked, “what do we do now?” They had fitted him for hearing aid molds during the ABR so we could get him access to sound as fast as we could. Two weeks later, he had bilateral hearing aids. We were told that if we wanted him to have a good chance at speech, because of how much hearing loss he had, we should look into cochlear implants. My husband and I discussed it, and we decided it was a good fit for our family. We spoke to multiple surgeons, and the day after his first birthday, he received bilateral cochlear implants.
Nathan’s surgery went as planned. He was a trooper. The doctor came out and told us we would be able to go back soon. Minutes turned to an hour, and then two. The nurses kept telling us he was just having a hard time waking up, which is normal with how much morphine he was given. Finally, we were able to go back. We sat with him for an hour and he still wouldn’t wake up enough to open his eyes. Soon he was having trouble breathing and swallowing on his own. He had episodes where he would stop breathing, and they would have to get him started again. They admitted him to the PICU, and the doctors were getting ready to put a breathing tube in until one of them recommended trying NARCAN (a drug that police officers and first responders carry to combat opiate overdose). They made me leave the room, and within seconds, he was screaming. It was the best sound I have ever heard! Within seconds of administering this drug, his color came back and he could breathe normally. We had to stay overnight for monitoring, but we were able to go home the next night.
Nathan’s implants were activated three weeks later. We were asked if the news could come and do a story on his activation, and we said yes. We were lucky enough to have smiles caught on camera the first time he heard our voices, and we were able to share that moment with everyone. It’s been almost six months since then, and he is babbling away, and saying mama and uh-oh. He also signs about 20 words, and Liam is picking it up fast so he can talk to his brother.
We are busy taking both sign language classes and early intervention visits in our home through the CHIP program and speech therapy in Denver every week, and physical therapy once a month. He is making lots of progress in all areas.
After we were told Nathan was deaf, we were admittedly terrified of his future. Having contacts and a community around us that understood our new lifestyle helped us to get back on our feet. I would love to be able to help other families accomplish the same, whatever choices they make. Now we can’t wait to see what the future brings for our family!