Newborn Screening Family Stories:
My little Max and Alex were born on May 15, 2014 at 28 weeks gestation. They came into this world a bit early due to complications of the twin pregnancy. They spent several weeks in the NICU learning to adjust to the outside world. From the very beginning they proved what little fighters they were and they met expectations earlier than anyone expected. Alex (the bigger of the two) passed all the necessary screening tests and was able to come home with us on July 5. Max was following right behind and was discharged on July 9.
Just prior to Max’s discharge, the nurse performed the second of the newborn hearing screens on Max. He had referred (not passed) on the first attempt a few days prior so they had to repeat it. Unfortunately, he did not pass this second screen and the nurse explained “it’s probably just because he’s premature and has small ear canals…it will be fine.”
So a few weeks later we met with an audiologist to have an ABR to confirm or rule out hearing loss. I had no concerns regarding Max’s hearing up to this point; it never even crossed my mind that hearing loss could be a consequence of being premature. Even up to the time of the ABR I was not worried, because like the nurse had said, I assumed he was just a little behind because of the prematurity but that his hearing would be normal eventually. So after the ABR when the audiologist told me “Max has severe hearing loss in both ears,” I was stunned. This was not what I had expected.
The thoughts began to pour through my mind of all the things my little man was going to miss out on…music, movies, talking on the phone, etc. I took a short time to grieve but then immediately dove into the world of hearing loss by beginning to learn sign language, searching for resources in our community, learning about hearing aids and cochlear implants and anything that could provide Max with maximum access to language.
I’m happy to say that on September 30, Max received his first set of hearing aids! He looks so adorable with them! Although it’s difficult to know what he can and cannot hear with the hearing aids, I feel that he is much more attentive and makes more eye contact when he is wearing them. My husband and I are so thankful that we live in a time when hearing loss is identified early in life and intervention can begin right away. I know that Max has been given the same opportunities as any other child due to the early diagnosis and intervention.