Why ask why?

Seaverlings 1999
Why was Dane the only deaf one?

She was a very smart mom. She read, asked questions, pursued every internet link. Still, the biggest question was the one that might never have an answer: Why did this happen? Why is my baby deaf?

So we talked about that, this new mom and I. Although I have had this conversation countless times over the years, my part in it has changed. The names and faces have changed, the technology has changed, the service providers have changed, the laws have changed, the decades changed, but the emotions remain remarkably unchanged. For those hearing parents who are stunned to learn their baby can’t hear, the hierarchy of need invariably begins with wanting to know why.

When Dane was born, we didn’t know he couldn’t hear. It would take 18 months to get a definitive diagnosis: bilateral/profound sensorineural hearing loss of unknown etiology. Since there was no sure way to know why, we shifted to: What do we do now? If you are reading this newspaper, you know that part of that answer would become known as Hands & Voices.

Honestly, the question of why wasn’t on my mind. I felt it was unproductive to think in those terms. What would I do with that information anyway? As urgent as the issue is at the time of identification, it usually becomes a non-event over time for most of us who can never know for sure. Far more pressing things needed my attention. Blessedly, I quickly arrived in a place of acceptance with a deep sense that Dane was meant to be exactly as he was. I mean that sincerely.

I didn’t know there would ever be any more to know. There would be.

Because Why

In the beginning, understanding why is the prime objective for most families for various reasons.

Janel Frost (Michigan H&V) certainly felt that way, “As a mom, I needed to come to grips with how much of this was my fault. Mason was a micro-premie—I was not able to carry him the entire pregnancy. That was very bothersome for me. Mason was born at 24 weeks. Took me a long time to let go of blaming myself for all of this and to realize that I did the best I could to keep him alive. Falling in love with my child just as he is helped me to be ok with whatever prognosis was to come. The doctors were pretty certain as to the cause of his loss (ototoxic drugs to fight a blood infection while he was in the hospital). Knowing this did help me to understand the diagnosis and what we could do moving forward.”

Tony Ronco (California H&V) recalled how their concerns were feed by the internet and the unknown. He and wife Jenny “wanted to assess how much we needed to plan and prepare for unforeseen challenges ahead. According to an internet article Jenny found, (our daughter’s) Usher Syndrome had a similar way of popping up into families with no known history of deaf members. Once the genetic test for the main Usher Syndrome markers came back negative, we could focus more on the task at hand,” Tony said.

When Karen Wisinski (Michigan H&V) learned her son was deaf, she also wanted to know if there were any related medical issues or syndromes. “I’m a ‘want to know everything’ kind of girl for education reasons. I wanted to know the likelihood of progression so I could make good decisions regarding communication. Also, now that I know what the gene mutations are, I have Google notifications set up to tell me whenever new research comes out.”

Like Janel, Karen acknowledged the concern many parents have that they did something wrong that caused their child’s hearing loss. “It was nice for us to know because it turned out that a mutation likely came from each one of us, so we never blamed each other or ourselves after we got that info,” Karen said. “And I was relieved that I didn’t have to worry about other serious medical conditions.”

Helen Cotton-Leiser (Oregon H&V) was glad she knew first baby Ashlin’s deafness was genetic. “It was important to know as it gave us knowledge and understanding. I didn’t have to wonder if it was something I did during my pregnancy,” she explained. With this information in hand, hearing the news the second time was much easier, “We actually wanted our next child, Mikaylin, to also be deaf so Ashlin wouldn’t be the solo in her family.”

Cause and Effect

Reactions to getting the news that one’s baby is deaf vary greatly depending on the cause. While hearing parents are often laser-focused on cause, not so much in the Deaf Community. When a baby is born deaf to a Deaf family, there is usually joy at their common identity that is now being carried forward another generation. Ah, you are one of us! The etiology is almost certainly genetic, but in deaf of Deaf families, the cause feels anything but diagnostic or clinical. It’s about pride in their identity; it’s about something that feels good and right. It’s causal but a different kind of cause: because we are that kind of family—a Deaf family.

When you’re not that kind of family and you and everyone in it moves through the world with a heavy reliance on the sense of hearing, the cause can be perceived as something that went wrong—that’s how you would feel if you lost your hearing. Further, your baby is being identified in a clinical and diagnostic context which can be intimidating. It is understood that parents’ reactions can range from confusion to shock to disappointment to grief. Hearing families have to learn a whole new identity. For some, the process takes moments, for others, years, if ever. Regardless, all families need good, non-judgmental support to navigate this new and unknown terrain to get to a place of acceptance and assimilation.

Cause and Closure

For years and years, the “etiology” (cause) of Dane’s hearing loss remained unknown. We were typical in that regard, hearing parents with no other deafness we knew of in the family, not counting Tom’s great aunt who died over 80 years ago. His mom recalled her deafness had been caused by an illness, but no one knew for sure. Actually, there was one account of possible deafness on my side of the family that went back to the 1880s. In a discussion of genealogy, my Grandma Ross recounted the story of my paternal great-grandmother’s baby brother. “Wee Donald McGeachy” got lost and froze to death one hard winter because he couldn’t hear anyone calling him. Right when she came to that part, Grandma took a full-stop breath then exhaled, Oh Leeanne, do you think that’s where Dane gets his deafness?

How could we ever know?

This marked the era of Leeanne’s even more enthusiastic “It Just Doesn’t Matter” perspective. I steadfastly believed that the sooner one got through the colicky stages of denial—typified by “why did this happen?” self-pity—the better for everyone concerned, especially the child. During those years, I was in full H&V family support mode, but I would more likely be found on the front-lines of IEP advocacy than engaged in discussions of deaf etiology. I just couldn’t relate.

Fast forward to 2015 when I got one of those 23andMe™ DNA-testing kits for Christmas. I couldn’t wait to get the results showing how Scottish I was, and to learn what else might reside in my genes. Well, there it was under “Carrier Status”—a marker for deafness known as Connexin 26. H&V had a lot of resources about this, I was certainly familiar with it, I just didn’t know I had it. This meant Tom carried this mutation, too, since it takes two little ‘r’ recessive markers for this trait to cause deafness. Indeed, each of our babies had a 25% chance of being deaf. Both of our hearing children might carry one marker for deafness. Dane got two.

So a new conversation began. This time everyone was part of it—Dane’s siblings, the cousins, extended family on both sides, my parents, Tom’s family. I went to a relative’s wedding and saw a little boy with hearing aids so I chased his parents down during the reception and opened the discussion with them, too. (Awkward!) But all of the sudden, it mattered very much that deafness ran in our family, even if it only showed up every once in a century!

So why does it matter now when it didn’t before?

Ironically, it didn’t matter until we knew why. Then how it mattered became clear. We know this is not just about Dane—it’s about the deafness in all of us. It has made us feel closer to Dane on a cellular level. I even feel closer to wee Donald McGeachy, and his parents whose anguish still resides in my DNA five generations later, I mean that sincerely.

What if I had known all of this when Dane started asking me why he was deaf—and all I could say is, “I’m sorry, honey, we just don’t know.” By adolescence, his growing self-awareness that he was different from the rest of us caused such anguish for him. Why did he have to be the only deaf person in our family, he would ask with this loneliness and confusion and resentment in his eyes. What if I’d been able to say, “Oh, you’re not, my love. Your dad and I both have a gene for deafness. Deafness runs in our family on both sides. In every generation that we know of, someone has been deaf on either dad’s side or mine.”

Knowing why matters because it mattered to Dane, who is still perfect exactly as he is.

And it matters because another mother is trying to wrap her brain around this astonishing information about her new baby. She asks if I ever wondered why. Oh yes, I tell her, I can understand that. I mean that sincerely.

 

© Leeanne Seaver 1/2018 as featured in her regular column for The Hands & Voices Communicator.