Having More Children

Dan and I had always talked about having more than one child. However, once I knew exactly what needed to happen for Hadley to be a successful listener and speaker, I put all thoughts of another child on hold. All of the research supported the fact that the first three years were critical for any child, and I didn’t want to do anything would detract from that for Hadley. My own brother and I are almost exactly four years apart, and that worked well for us, so I thought I had plenty of time. Our focus was to do all we could to develop Hadley’s listening and speaking abilities. Everything else could wait.

By the time Hadley was three, she frequently talked about having a brother or sister. Many of her friends were becoming big sisters, and she wanted to know when she would as well! Dan and I were well aware that any child of ours had a 25% chance of inheriting a Connexin 26 hearing loss. Of children with Connexin 26 hearing loss, approximately 60% of them have a profound loss or more, requiring a cochlear implant. Hadley fell into the 20% category of “just” a severe loss. We were quite confident at this point in our abilities to be capable parents and strong advocates for a hearing aid using child. Cochlear implants came with a different category of concerns and challenges. Could we handle that? Hadley’s first few years had been extremely intense. Could we continue to give her what she needed and simultaneously do the same for another child? While diagnosing the cause of Hadley’s hearing loss, the genetic counselors informed us of the option to have other children through fertility treatment and screen for the Connexin 26 gene. Was that the way to go? There were no clear answers (believe me, we asked many parents and professionals!). By now, we were used to thinking of Hadley as a person first, her hearing loss second. Both Dan and I are the oldest children in our families; we wanted that experience for Hadley too. Hadley continued to tell us that she wanted a baby in the family. Our family just didn’t seem complete at three.

As fate would have it, our family wasn’t complete at four either. In December 2006, Hadley became the big sister to twin boys, Conor and Brady. Although we had prepared ourselves—and Hadley—for the news of another hearing loss, both Conor and Brady passed their newborn hearing screen at the hospital, as well as subsequent ABRs at Children’s Hospital Boston. They are healthy, hearing boys who challenge our parenting in a host of new ways! Being a big sister has expanded Hadley in countless ways. Other than choosing AVT as our communication methodology, giving her this expanded role in our family is among the best decisions we have made for her—and us.


Hadley (5 1/2 years) with Brady and Conor (2 months), February 2007


Hadley sings to Conor (4 months old), April 2007

The Journey to Hearing Aids

As new parents, Dan and I were at a loss. The information we were given, to wait two months and have her tested at a rehab hospital, seemed inadequate. Life was busy, however, with new parenthood and we went along with the nurses’ advice to forget about this for a while and test Hadley’s hearing at home by banging pots and pans. Those first few weeks at home with Hadley were pure joy. We loved having a baby in our lives and threw ourselves into parenthood. After a few days, the sharp ache in our bodies brought about by the news of her newborn hearing screen abated. In fact, there were days when we didn’t think too much about it. Our fears would immediately resurface anytime we played the “did she hear that?” game. Rarely were we able to say that, in fact, she had.

In mid-November we brought Hadley to a local rehab hospital for reevaluation. Over the next several weeks, we returned to have her hearing tested, each time leaving without certain results. Our gut instinct was that the audiologist who tested Hadley was not sufficiently educated in infant hearing loss, but we were not yet skilled in being strong advocates for Hadley. Luckily, Hadley’s pediatrician presented her case to his fellow medical colleagues that resulted in the recommendation to refer her to a doctor at Boston’s Children’s Hospital. Once there, we felt that we finally were on the right path for Hadley. We were given a wealth of information and were encouraged to be active students in learning about hearing loss. This was the motivation we needed to become aggressive in our own education.

At four months, Hadley was diagnosed with a severe bilateral sensorineural hearing loss and given the approval to receive hearing aids. The red line in the audiogram above shows what Hadley hears without her hearing aids, all well below the "speech banana", which is the frequency at which spoken words are heard. We learned her hearing loss was caused by a mutation of the Connexin 26 gene. After another false start with the earlier audiologist, we were referred to another audiologist who specialized in fitting young children. At six months, Hadley received her first set of hearing aids and began wearing them immediately. Here, she sits with her great grandmother, on her fifth day of wearing hearing aids. You can see her fingers exploring her left aid!

Despite thinking of hearing aids for several months, seeing them on Hadley was very strange. They were large, behind-the-ear hearing aids that we secured to her body with a bright pink strap (that she selected!). When the audiologist first turned the aids on, no drama ensued. She wore her hearing aids during all waking hours with minimal fuss. At six months old, life was changing dramatically for Hadley every day; suddenly hearing the sounds of the world was no more startling than learning how to flip over to get a new view of things. For Dan and me, all we could think about was making sure her hearing aids were on, in correctly, clean, staying out of her mouth... Our worries and questions were endless. This was going to take some getting used to.