Thinking back to the day I first knew of Lainey’s hearing loss was one of the most difficult days in my memory to revisit. I hope that by explaining what we went through and the emotional impact it had on our lives that other parents of severe to profoundly deaf newborns will know what to expect and can take some comfort in the shared experiences.
The story is not an easy one to tell. Early on, we discovered firsthand a feeling many in the Deaf Community had warned us about: that in many ways, getting the news your child is deaf or hard of hearing is like losing a loved one, and that over time we would experience a similar grieving process. Over the last nine months, we have accepted the news of our daughter’s deafness and all the challenges it brings. My husband David and I, as well as our extended family, have had to become educated on Lainey’s hearing loss and the best way to help her develop. We are just at the beginning of a new journey. We often meet other families of deaf/hard of hearing (d/hh) children, d/hh adults and dedicated professionals. With this knowledge, we are coping and adapting to our new way of life. When I hear about the diagnosis of children from other families I feel emotional inside. Sharing these stories can bring a little bit of the initial fear and sadness back but it also helps us know that we are not alone. We enjoy getting to meet others in the Deaf Community and have benefitted from their moral support.
Lainey and her twin brother Jace were born October 29, 2009 at Winnie Palmer Hospital in Orlando. Except for expecting twins at age 37, I had a very uneventful pregnancy. I was busy chasing after my two-year old toddler Lauren and keeping my many medical appointments. The lab results from my integrated screen were within normal limits and I decided not to opt for amniotic or further genetic tests. Ultrasounds conducted often at Winnie Palmer were showing the babies growing near perfectly although Lainey was breech and Jace was transverse. However, my last ultrasound at 35 weeks indicated my amniotic fluid was low for Lainey. For that reason, the twins would be delivered the following day.
Lainey was born two minutes before Jace. The origin of her name is Greek and means a bright light or torch. She was tiny at just five pounds, with red hair like her dad’s. I noticed her cry was very soft compared to her brother’s. I didn’t see Lainey again for twenty-four hours. I was told she aspirated meconium and was being observed in the transitional nursery and David kept visiting her every hour. I heard that her breathing and feeding were noisy as well. The nursing staff assured us she was doing well, but David and I sensed a problem.
On the second to last day, we were told that Jace passed his Newborn Hearing Screening but Lainey did not. The hospital explained she had too much fluid in her ears to test, although common nonetheless left us concerned. I would have to return in two weeks and have her retested. The worried feeling continued for both of us even though staff tried to tell us that in all likelihood it was just the excess fluid.
When I returned in two weeks there were two audiologists present. They first tried the ABR, followed by the typanogram and finally the Otoacoustic Emission (OAE) test. They were suddenly very solemn and weren’t saying a lot. One audiologist remarked to the other that “it was very low.” I just kept staring down at Lainey, not realizing or able to believe her life was about to change and going to be so very different than I had first imagined for her. When I wasn’t staring at Lainey, I was watching the hands on the large wall clock next to me in the tiny office move ever so slowly. I felt the desire to flee the room but I was partly numb and could not move. They put their equipment away and gave me the bad news but they wanted a retest in a couple of weeks. At that point I didn’t expect that retests would produce different results. Carrying Lainey back to the car through the hospital garage, I pondered how to tell our family. I first had to place a call to David who was at home watching Lauren and Jace. That call was extremely difficult; he confessed he had a bad feeling as we were leaving for the retest. Neither David nor I had any experience with deafness. We were scared about caring for a deaf infant. I didn’t know what to do, just having had newborn twins and a toddler was overwhelming enough. The Early Steps program was mentioned in the office but I was still absorbing the news and felt powerless to conjure and ask any questions.
I didn’t know it at the time but I would be seeing many audiologists in the next months of Lainey’s life. The Early Steps program has also become a big part of our life. They are providing audiology, development and therapy services to help Lainey until she turns three years old. The early newborn screening made a huge difference for all of us just like it has for so many other families. It is hard for me to imagine finding out about her hearing loss when she would be a year or two old.
When I look back on the course of events, David and I really did not have much more than a day to mourn the news that Lainey is deaf. Ever since that day we have been on a constant quest to gather information, keep medical appointments and talk with anyone with experience in order to help Lainey. Having twins is a double blessing and the biggest challenge of our lives. David and I get asked all the time “How do you do it?” For that question there has been no easy answer. Having just one child is tiring enough. Lainey is significantly quieter and more self-soothing than her brother Jace or her big sister Lauren. We have struggled to keep up with their activities while not leaving her too much on her own. While the benefits of her physical therapy for her low muscle tone have been slow moving, we are starting to see more improvements.
David and I have met some inspiring kids and adults that use cochlear implants and appreciated the stories of how the implant helped their lives. The difficult decision to pursue implants for our daughter was made as a family with as much concern and love as possible. We still want her to have options along with access to sound that would include learning sign language and speechreading. Doctors inform us auditory oral skills will have to be the primary focus. There is no guarantee with the cochlear implant nor is it a cure, our expectations have to remain realistic. Lainey’s Ear, Nose and Throat (ENT) Specialist is currently ordering a series of preoperative tests to establish whether she will be a good candidate for bilateral cochlear implants.
The exact cause of Lainey’s hearing loss has yet to be determined. I felt a sense of relief when lab work eliminated Toxoplasmosis, Rubella or Cytomegalovirus as a cause because I feared that I had passed something inadvertently to one of my twins. Next we opted for a couple of genetic tests that determined that Lainey had neither the mutation Connexin 26 GJB2 nor the GJB6-Related DFNB1 which are the most common causes of genetic hearing loss. Her doctors do not discourage us from looking for these answers although additional genetic tests will be expensive and our financial resources are quite limited due to planning for the cochlear implants.
David and I have been told by her doctors that there may not be an answer as to why Lainey was born with hearing loss. David (who is a biologist) and I want to satisfy our own curiosities and put it to rest in our own minds. Our faith helps us to be at peace. We may never know and try not to get our hopes up for discovering the cause. More importantly, as parents we wish for Lainey to have answers for why she has hearing loss while her sister and twin brother do not. We want our daughter to have answers whatever they may be, but not to limit her either.
Florida Hands and Voices is a new chapter that has been headed by Katie Dagenais, also a mom of young children. David and I are involved in Florida Hands & Voices with hope that Lainey will strive to be involved with us as she gets older. As a family, we mostly appreciate that Hands & Voices is non-biased towards the communication mode we choose for Lainey. It has been a wonderful experience to meet new people and families at the monthly meetings and organized playgroups, and we encourage any parent with deaf or hard of hearing children to participate, learn, and be involved in this one of a kind support network. The support we get and give to one another will someday be a gift we give to our children that they will pass to future generations in both the Deaf and Hearing Communities.
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