Our local ENT referred us to a Boston Children’s Hospital otolaryngolist Dr. Margaret Kenna. We were given an appointment a week or so later which is almost unheard of when making an appointment at Childrens. In case I fail to applaud this doctor in any future blogs let me just say she has changed our lives in regards to Jacob. I couldn’t have found a better advocate for him and our family than her.
Howard and I carried in Jacob in his infant car seat into the exam room. I took him out to hold him knowing that we were in unknow territory. Never in our wildest dreams could we have prepared ourselves for the amount of information we’d receive. I wish I had brought a tape recorder because by time 2 minutes had gone by, I totally zoned out. I had to give a detailed account of his birth and all the subsequent things that happened. I didn’t know what antibiotics they gave him when he was struggling to breathe. Was he given the Gentomicin which can cause hearing damage if he was given too much? I would have to call the hospital and find out (yes he was).
Dr. Kenna explained that the hearing canals and structures are developed during the weeks 15-20ish of pregnancy. I had a major bout of strep throat during week 17 was that the cause? She explained to us that Jacob would start with genetic testing and an EKG during this visit and would need to have a C-T Scan in a few weeks. I brought in a baby with hearing loss in one ear and now they are telling me his hearing loss could affect the other ear. He may have a disease that affects his heart. They are going to take how many vials of blood to do the genetic testing? It was an overwhelming moment but I had no choice but to move forward.
Jacob had numerous vials of blood taken that morning to test for
Connexin 26, 12 S rRNA Mito DNA Mutation, Pendrin, tRNA-Ser Mito Mutation, and a general CBC. Thankfully his heart on the EKG was normal for his age. The one test that they couldn’t test for is the syndrome that I and a few family members show signs of which is branchio-oto-renal syndrome. My grandfather, father, nephew and I have cavity pits on the side of our outer ear.
This time I would be able to go into the sound booth and watch them give him a hearing test. So I sat in the chair with him on my lap facing an audiologist. While they placed the tiniest of earbuds in his ears with wires coming out. The idea is that when the sound is presented in one ear at a time he'd turn his head in that direction. I couldn't hear anything but every so often I would see him turn his little head. Then it would seem like they stopped doing the test but nobody was saying anything like it was done.
All of a sudden I could gradually hear the sound getting louder and louder. They were testing his deaf side and the decibal range was louder than a jackhammer in his ear. Still no response. Eventually the sound was so loud outside the earbud that is radiated over to the right side and he'd respond. I could feel the tears pricking the backs of my eyes. I knew my child was deaf and the test came back as we expected Profound hearing loss on his left ear and normal range on the right. The audiologist says to us well I know this is alot information but the good news is that he'll have "Normal Speech and Language" but there is nothing we can do. No hearing aids, cochlea implants,and will have an invisible disabilty unless he shows hearing loss in the other ear.
We left the office with the recommendation of getting Early Intervention before 6 months old and make sure to limit background noise when speaking as much as possible to aid with speech and language development. Until the genetic testing was completed and the C-T scans I was at the mercy of internet researching to find answers. What were these syndromes that they were testing for. What are the symptoms, are they passed down thru family, is my child going to sicker than I thought? By the way there is not a lot of good information on Unilateral Hearing Loss and certainly next to nothing on support for parents with children with this condition. Unless you are someone over the age of 50 or it is hearing loss from Treacher Collins or audiotory neuroma you are out of luck finding appropriate material that applied to Jacob.
The C-T Scan would hold the answers for us but that is another story.
3 comments:
Which grandfather has it??? Lester's or Mary's? Which nephew? Lisa's son? It's odd (?) that we both have sons with speech delays and both are named Jacob. My Jake's ears are normal, as far as I know...
It is on the Simpson side of the family. Jacob does not have the ear pits and neither does the rest of my kids. Lisa did not have them but her son does. So it can skip a generation. Have you ever had your sons hearing checked? Sometimes a speech delay is because they don't hear certain sounds and the child only says the parts of words that they can hear.
Yeah, he's had several hearing tests and passed them all.
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