Januwas the beginning of a new journey for Joseph. Joseph received his CI three months after his third birthday. While CI’s sometimes work and sometimes do not work with ANSD, we felt as if we needed to see if a CI would be successful for Joseph. While Joseph was making progress, it became evident around the age of two and a half that his progress had plateaued with his hearing aids and that he would need a cochlear implant (CI). We enrolled Joseph in auditory verbal therapy. Joseph received his first pair of hearing aids days before his first birthday. Would Joseph be able to enjoy music like we do? Would he ever be able to sing? The questions were never ending. As musicians, knowing we were going to have a hearing impaired child was a tough pill to swallow. Hearing aids may work or they may not, he may ultimately need a cochlear implant(s), he may be dependent on sign language – he just didn’t know. The ENT met with us several days later and told us that a future with ANSD is often uncertain. If I had a dollar for every time I was told my child could hear, I would be one very rich woman right now. While someone with ANSD may technically “hear”, it doesn’t mean they can understand. I once had someone describe it to me as listening to the radio while driving through rural countryside and the radio keeps fading in and out due to poor reception. The best way to describe ANSD is as a disconnect between what the ear hears and what the brain understands. Holland’s Opus moment” – we knew Joseph could not hear.Ī few days later, Joseph was diagnosed with Auditory Neuropathy Spectrum Disorder (ANSD). As I reached down into the stroller to cover Joseph’s ears, I saw he was sound asleep and completely unphased by the helicopter flying very low above us. While we were enjoying time as a family in the garden, a helicopter flew overhead to land on the hospital. Several weeks later, we had been given permission to take Joseph to the garden at the hospital without being accompanied by a nurse. There was no question that he should receive the drug in order to live. We were told that if Joseph didn’t have this drug, he could die but that if he did receive this drug, there was a good chance he would lose his hearing. In order to treat the infection, Joseph was given strong doses of Gentamicin – an ototoxic drug. Joseph was subsequently left with 41 centimeters of small intestine.
When Joseph was five and a half months old, just days before discharge, he developed a late onset case of Necrotizing Enterocolitis (NEC). We took this to be true and crossed this off the list of things to be worried about.Īlthough Joseph had not passed his newborn hearing screenings, we never had any concerns about his hearing as he always seemed to respond to our voices. We were told not to be too concerned as many preemies often fail their hearing screenings at first but pass once they are older. Joseph failed both of his newborn hearing screenings. Campbell passed away after 23 days of life and never had a hearing screening. When our twin boys, Joseph and Campbell, were born at 24 weeks gestation, we quickly learned that preemies can have hearing loss. Scott, his twin sister, father, and grandmother are all hearing impaired.
A hereditary hearing loss is prevalent in Scott’s paternal family. When my husband, Scott, and I made the decision to have children, we knew there was a strong possibility our children would have hearing loss once reaching adulthood.
0 kommentar(er)
