The Westfall Story: Waterbirth, Hearing Tests and Late Identification
A Third Child Joins the Westfall Family
William Owen Westfall, aka “Little Wow”, aka “Liam” is our third born. He’s a blond
haired, blue-eyed whirlwind of smiles and monster noises who still allows cuddles even
though he’s tall for a 3-year old and can no longer snuggle into my lap tip to toe like he
used to. He’s got mild to moderate hearing loss and is subsequently delayed in his speech
and language but is otherwise able to throw (e.g. food, balls), run (e.g. out the door and
around the corner before we know he’s gone), sing (ballads that only mommy
understands) and wreak havoc on any sense of order in any given room (although he also
participates in clean up if you sing his favorite song).
Liam has two older sisters, 9 and 6. They are “typical” hearing sibs as are all their
cousins, aunts, uncles, grandparents and friends. Before Liam, no one in our family or
“universe” knew any hard of hearing or deaf children. Looking back, we were not slow in
doing what we had to do to move forward with appointments and services and all that a
newly identified child with hearing loss needs, but I think our emotional acceptance of
the diagnosis and its implications definitely lagged behind.
Liam was born at our local hospital about two hours after I waddled in. I’d delivered his
sisters in record times, so our midwife was on the scene PDQ and our nurse didn’t waste
any time getting me and the room prepped. My one big demand for this, our third and
final round, was that I get in the Jacuzzi. This was priority #1 on my birth plan and my
big concern when they wanted to run the monitor or start the IV or fold my clothes – “Is
this going to take long? Is the water running? Can you do that after you’ve checked the
Jacuzzi?” I think I tried to be pleasant about my request, but I’m pretty sure there was no
mistaking that this woman was determined to spend part of her stages of delivery IN THE
JACUZZI! Please also factor in that it was against hospital policy to deliver in the
Jacuzzi. Simply not allowed. Mmmm hmmm.
So I finally got my Jacuzzi time about an hour into the Blessed Event. Hated it. The
stupid jets were in all the wrong places and were set way too strong and the controls were
on the edge so I kept turning everything on every time I leaned against the side, which I
only did during contractions. The first few times I accidentally turned on the jets I was
beyond irritated, but about the third or fourth time it happened I just couldn’t help but
laugh. Honestly, I think it was the laughing in the middle of contractions in the midst of
this silly annoying bath that precipitated Liam being born in about 20 minutes. In the
Jacuzzi of course.
I detail the circumstances of Liam’s “waterbirth” because that happening ended up
factoring significantly into our story of identification. Even though it is not medically
probable that Liam being born under water had anything to do with his hearing loss, that
was the factor that everybody focused on for the first several months of his journey. “Oh,
I see he had a waterbirth. He’s just got water in his ears. Give it a few months and he’ll
be fine. When you talk to him just talk a little louder because he hears like he’s under
water in a swimming pool. Once his Eustachian tubes start draining better, he’ll grow out
of it.” This after four failed Newborn Hearing Screening tests and a full-on ABR
(Autonomic Brain Response test).
More Complicating Factors
Liam did get an ear infection at about 4 months old and we were assured that he needed
tubes in his ears to drain the fluid so a) he wouldn’t suffer from chronic ear infections and
b) he could begin to hear normally. Everybody seemed on board with this logic except
one audiologist who frowned and told us she didn’t think the tubes would change the
ABR. Being models of modern parents in denial, we studiously avoided any internet
research on the topic and chose to believe that getting “that there water” out of his ears
would put the whole question of hearing loss in our rearview mirror. So we scheduled the
surgery, arranged for the girls to stay with grandma, and made the harrowing early
morning trek down to Children’s Hospital Colorado. I was all in knots about the risks of
anesthesia on my newborn and really not happy about the whole deal to begin with but
willing to struggle through the one day in order to save ourselves many hard days down
the line. Because Liam’s first ABR at ten weeks old had been such a trial--have you ever
nursed a baby for three hours straight???--there was some controversy about whether it
was valid. At Children’s, they could quickly do a second ABR while Liam was “asleep.”
so we agreed to that, too.
I’ll never forget the look on the audiologist’s face when she came out to report on the
surgery. She was clearly reluctant. Upset? Sad? She quickly assured us that Liam was
fine. He was in recovery and the tube placements had gone without incident. There had
been no fluid, though. Not a drop. The ABR confirmed Liam had mild to moderate
hearing loss. There was no question now. No story to hide behind. Our little boy had a
lifelong condition that would make it harder for him to succeed in this harsh world, that
might set him up for cruel taunts and bullying; make our love somehow more distant to
him than our other children. We didn’t know anyone who’d gone through this; didn’t
know anything about raising a child with hearing loss. We cried together and then went to
be with our son as he woke up in this big, disorienting, alien place… or maybe that was
my perspective.
Everyone called to get the good news about how well he’d tolerated the surgery, about
finally putting the question of hearing loss to rest. When I told them about the diagnosis
they were all my mixed thoughts and emotions personified: “No! They must be wrong. I
don’t believe it. You need another opinion.” “Why you? Why him?” “Oh the poor dear!”
“I’m so sorry!” “It could be worse.” “What are you going to do now?” “What does that
mean?” I mostly stuttered and stumbled around the best answers I could come up with at
the time and dreaded the phone and the well-meaning concern and the bumping into
people in the church halls. My focus shifted from what we thought we knew about babies
and parenting to what we didn’t know about parenting Liam.
We were shocked to learn that at six months, Liam was bordering on being “late
identified.” They fit babies for hearing aids? We were contacted by a slew of agencies
and therapists and professionals who obviously worked full-time in this arena that we
hadn’t really even known existed. They all either wanted us to come to them or to show
up in our living room – really??
I quickly became the researcher, expert, teacher, learner, and scheduler. I wanted answers
for me and for all the people who expected me to explain things I had never before heard
of or considered. I needed answers for all the people who overnight showed up in our
lives wanting to know what we wanted, what we preferred, what we expected. It’s all still
a bit of a blur.
Slowly, I began to realize that we were a bit like Alice in Wonderland. We hadn’t asked
to fall into this new world of methods and methodology and agencies and therapies and
hearing aids and acronyms. At first it was strange and scary and disconcerting. But after a
bit, once we’d made some choices and started moving forward we found we liked being
able to learn about options and we were relieved that hearing loss wasn’t viewed or
treated the way it was a generation or two ago. We found new friends in the professionals
who helped us navigate the new terrain and the parents and families and role models who
shared their stories. We discovered unexpected strength to be advocates and teachers
where before we wouldn’t have had the motivation or information to share. And we came
to appreciate a new and valuable perspective about what is and is not required to succeed
as a child, a parent, and a family--that it doesn’t take everything going well or smoothly
but it’s what you do when things don’t go the way they “should” that reveals character
and priorities and depth of relationship. Trust me, I could say I believed that before Liam
was born, but it took on a whole new life once I experienced the step by step reality of it.
I love the thought that what seemed a detour turned out to be just the thing we needed to
get us onto the path. Liam is just who he should be, with all the abilities he needs to
succeed in this world. I still worry about him--because I’m a mom and I worry about all
of them. I will advocate for him and fight for whatever modifications or accommodations
we can get our hands on to help him access information and ideas and friends and all the
things we all need to grow up. Getting to know other parents with deaf and hard of
hearing kiddos has been pivotal. We now know successful, wonderful Deaf and Hard of
Hearing adults. We have knowledge and understanding and hope. The transition from
denial and fear didn’t happen overnight and isn’t complete. Tomorrow might be another
day of anxiety over Liam’s delays or his IEP or, or, or…. But then I’ll catch that brilliant
smile or hear him tell his sisters a “story” and I’ll remember that we’re going to be okay.
Wonderland indeed.