Luckly, Howard was at the point in his job that he could leave work. He met us at the hospital just as my mom got me to the Maternity floor. And they thankfully were able to get me prepped for surgery pretty quickly. It was a good thing because I could feel the labor progressing very fast and I was in desperate need of pain meds.
It seemed like as soon as it started it was over. I strained to hear the baby crying in the distance. "Howard go with the baby and make sure he is ok" I quietly said. But after he left Howard didn't come back. As seconds turned to minutes I knew something was wrong. As they were finishing the operation he came back to tell me Jacob was struggling to breathe and they had to start an IV. When I was in recovery I had Howard stay with him and take a picture of the baby on the phone. I didn't even get a chance to see his face before he was wisked to the nursery.
The LDRP floor was busy that night so I was being assigned the last room on the floor in the farthest place from the nursery. I saw that he was in an isollette when they wheeled me by heading to my room. A few hours later our pediatrican came to tell me that he was going to be in the nursery for awhile and that I should take a rest until I could walk around.
This is where the determination of motherhood came into play. I sent Howard home to take a nap and he figured since I still had all the tubes that confined me to my bed I wasn't going anywhere. If only he knew what I planned to do when I got the chance even though I was in real pain emotionally and physically. The nurse came in right after he left to go home and asked if I wanted the cath out. YES was all I could say because I was going to see my baby. The nurse left my room and I started the long trek of heading to the nursery. I made it and they gave me a rocking chair to sit in. I pushed my hand thru the little window on the side so I could stroke his hair and see his little pink face. There he was my little Jacob 6lbs 7 oz. 19 1/2 inches long.
His breathing became regular and pulse ox went into a normal range. The nurse took him out of the isolette so I could finally meet my little boy. "Jacob, if you want to get out of the box you have to breathe" I whispered. Howard came back and got nervous when he couldn't find me. They convinced him to take me back to the room. By then I knew I missed a dose of pain meds and I could barely move. He had to get a wheelchair to get me back to bed. Jacob was doing so well they felt he could have a bath. Big mistake. He went backward and they had to restart the oxygen.
An hour later I went back and again told them to give him to me. As soon as he was in my arms his breathing regulated. However, Satan the nurse from Woman and Infants (another hospital) was working a shift in the nursery. I kept asking when could he come in the room with me. Her response was that he may have to be brought to W and I and he was a little premature yadda yadda. She knew best and I knew nothing. Anybody that knows me, also knows that I was determined during my previous pregnancy despite preterm labor to not deliver at the baby factory in Rhode Island.
I would have held Jacob 24/7 before he was going to Rhode Island. As long as he was in my arms he was fine. This nurse didn't know who she was dealing with when she met me. I knew he'd be ok if they just left us alone to be mommy and her child.
I didn't break down until later that afternoon. This was not the birth that I wanted and what I was promised after recieving 20 weekly shots of progestrone. My baby was supposed to be healthy and as long as I got to 35 wks he'd be fine. I got to 36 wks 6 days. Why was this happening to me was all I kept thinking?
Later that night, they finally figured if he was going to be on an IV and oxygen monitor he could just as easily be on in my room. Once we started the rooming in process things started to get better. We got rid of the IV a day later and lost the monitor too. I told Howard to keep the dragon lady out of my room and all would be good.
The day we were being released a nurse came in to tell me that Jacob failed the newborn screening test for hearing twice. They had me on a phone with the department of health to make a follow up appointment to recheck his hearing before I could absorb what she just said. "Don't worry, 9 times out of 10 its because there is some fluid left in thier ears from the c-section" was how she said it. I really wish she never told me that. We didn't know we'd be on the bad side of the statistic and the journey that was going to become our lives with Jacob.
We took Jacob home with the knowledge that he was going to have a hearing test when he was 4 weeks old. I loved rocking and singing to my third son. The part that surprised me is that when he slept very soundly and was hard to startle. At the time I thought this is great a baby who sleeps like a rock from the very beginning. Don’t get me wrong he woke up to eat but then would fall back to sleep relatively quickly. This was wonderful!!!!
A week or so after we came home I received a letter in the mail outlining what we had to do to prepare him for the 1 to 2 hour test.
1. Don’t let the baby eat 3-4 hours before the test.
2. Don’t let the baby sleep after they eat
3. Bring a blanket to wrap the baby in.
Number three was easy but how do you keep a newborn awake? In the car I sat in the back with him and kept rubbing his cheek and then I took off his socks and was tickling his toes. When we got to the audiologist she told us other parents have used refrigerated wipes to keep the baby awake. Why didn’t they tell us that trick earlier?
They brought Howard and me into the sound booth where I could feed him and try and get him to sleep. He needed to be deep sleep for the audiologist to study brain responses (ABR) to sound. I got him to sleep and laid him down flat on the stretcher. Oh no this is going to be a problem. He never slept flat. I had him sleeping in a baby bouncer seat because it was easier to pick him up after the c-section. He didn’t like laying flat and kept waking up. Plus he was a little stuffy from having a cold coming on.
About 20 minutes go by and Howard and I are waiting in the reception area. They couldn’t do the whole test he was too congested. What they found is that he failed on both sides and essential he was deaf at the time. We’d have to come back after the cold was gone but he still needed to be in the window of being an infant under 12 weeks. I guess after 12 weeks the babies are not as reliable to take the test from just sleep depravation and they’d have to sedate them at a hospital to do the same test.
Jacob was 8 weeks old when we went back. They allowed us to take the cloth part of the car seat and they’d try and do the test with him sitting reclined and sleeping. This time they were able complete the whole test. The audiologist came out to get Howard and me while her assistant feed Jacob the rest of his bottle. I should have known something was wrong when she said come into my office we need to talk.
I brought a notepad and pencil and was ready to write everything she said. “Your child has a profound sensory neural unilateral hearing loss. Jacob is deaf on his left side and has normal hearing on his right side. This is a good thing he’ll have normal speech and language” she said. This is where I stopped writing. However, there are many things you need to consider with a child with single sided deafness. It is an invisible disability and not everyone will understand the impact he will have. He will struggle with interacting with his peers. He won’t know the direction sound is coming from so it is a safety issue near a road with cars. He’ll need an FM in the classroom and most importantly he’ll need Early Intervention and an Otolaragologist. My head was swimming with all she said. She did say normal speech and language right? Whatever that means.
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.
In early February we went back to see Dr. Kenna to find out the results of the genetic testing and the CT. Jacob has a malformed cochlea and a narrowed auditory nerve. The genetic tests show that he doesn't have any of the diseases that they tested for. In theory his hearing should remain on his right side. As long as he doesn't damage the ear with loud noises and iPods he should continue with a unilateral hearing loss on his left side.
We should be optimistic and continue our lives as we would have if we didn't have child with hearing loss. The only thing is I couldn't help that I looked at Jacob differently than I did my other two. I thought of him as a fragile baby that needed me to interpret his behavior for others.
Jacob had a high pitched shrill scream that made the hair on the back of your neck stand up and hurt your ears. People really didn't want to be around him for long periods of time because of the screaming. Jacob was never a baby that liked to be held or rocked to sleep which I think my mother and grandmother had a hard time with. He would make his body be rigid when he didn’t want to be picked up and that made people not really bond in a good way with him. It made me feel very self conscious of our little family and I began to make me isolate myself and him. It almost felt like people were saying, “Oh shit here comes Jacob.” Howard doesn't admit it but he didn't tolerate it well either. He still is much harder on Jacob than he ever was or is on Matt and Alex. I can't help but try to protect Jacob from harsh criticisms and judgments. I felt like I was being criticized as a mother because I couldn't stop the screaming of her child. I became very defensive and thought no body understood what I was going through at the time.
I can't tell you the amount of times that we were in a restaurant and told people he is hearing impaired and that is why he is not listening to me telling him to sit down. Family would tell me it wasn’t as bad as I made it out to be. Look when I call his name he turns around was a common statement made by family members.
And then I would have Howard going around that if Jacob was our first he'd be our only child. OK I admit Jacob is a total handful but he is my handful. I love this kid with all my heart and he is the child that made me into a better mother and advocate for my children. If it wasn't for him I wouldn't have been as knowledgeable on the IEP process when I had to go through it with Matt and Alex. Jacob has made me a better person and I don't judge others as quickly because there might be an underlining reason why they act a certain way. I am now prepared to be the lioness to fight for her cubs and not let them slip though the cracks of the education system. And I owe it all to him and he will know as he grows up that no matter what I will be in his corner and cheering all his victories and pushing him through his losses.
