Backwoods Runaround (Introduction)

[Guest guest]

The pediatrician identified Clara's deformity by name while we were

still in the hospital; but at the time, all I could see was an ear

that stuck out.

We were told it was a cosmetic problem, and we started with only the

feeblest attempts at repositioning, randomly switching sides of the

bassinet/crib. I was totally unconcerned -- first mistake.

When we were asked, around six months, whether we wanted to see a

physical or occupational therapist, perchance to receive a helmet

after said therapy failed, I didn't pick up on the clues that our

pediatrician was anti-helmet. Like, when she asked if we wanted a

" second opinion. " Translation: " there are grounds for the opposite

opinion, but I just copped out of explaining it to you. "

It sounded like she was offering a consultation about more assertive

repositioning for a persistent cosmetic problem. Unfortunately, my

daughter was always beautiful, and that worked against her in my

judgment. I knew Grandma daycare had the tummy time/bumbo sitting/

naps covered. And as a proud, former nursing assistant, I could roll

a blanket as well as anyone. So I skipped the referral -- second

mistake. (I would later learn that the PT was the only professional

available to me who even knew *where* to get a helmet.)

Meanwhile, Clara's eyes were starting to cross when she was tired.

According to a pediatric eye surgeon, to whom we were referred by the

pediatrician, she had " pseudostrabismus. " The illusion of a crossed

eye. And not at all related to the flat head, according to the

pediatrician.

Hearing this last, my suspicion was aroused. Because obviously, the

pseudostrabismus *was* related to the flat head stretching a little

bit of her eye corner laterally to create the illusion. Why wouldn't

a doctor acknowledge that the skin at the back of the head is

connected to the skin of the face? So I started taking an interest

in... Clara's eye problem. I still couldn't comprehend the syndrome

that was developing.

Some time after Clara becomes a year old, the one-year visit to the

pediatrician rolls around, and lo, torticollis is concerning her

more. I am rather concerned about the worsening head shape and ear

displacement, and no longer believe that the eye isn't actually

crossed. We now agree to take the referral to PT/OT, still unspecified.

Now, the story becomes truly ridiculous, as the fundamental mistakes

are compounded by just bad service:

I had to call back after a week and a half and remind the doctor that

we had asked for a referral. That's when I looked up this group and

learned the word, " orthotist, " and I pronounced it both ways to her

receptionist. We never heard back from the doctor, but a referral

came from the office after a couple days. It would take about a

month to get in at... the local outpatient rehab center?

Being aware, from my reading here, that we had no time to waste

getting a helmet, I asked if we would be seeing an orthotist with the

power to make a helmet; and the idiot on the phone said, " yes, she

[the PT] makes them right here. " So I thought Clara would be getting

a " local " helmet. I laughed at myself for thinking my community so

regressive and provincial.

Needless to day, I was more than a little disappointed when all we

got from the PT was another referral. But at least she did take our

side against the doctor, now revealed to be our antagonist, that a

helmet was the necessary treatment. And she assured us that the mild

torticollis could be taken care of at home without even physically

manipulating Clara's neck.

Unfortunately, the orthotist she referred us to, or rather, all the

orthotists in that company, had lapsed in STARband certification.

Oh, well, there went another couple of weeks, as we were referred to

a different concern, an hour's drive away.

And, the final insult: after taking the head mold, our new orthotist

went on vacation. There were three weeks before the fitting.

The bottom line is, human resources are still insufficient in this

region. I'm hoping that because there's more money around the

hospital near our orthotist (Dartmouth-Hitchcock), our luck will

finally change.

--

Thad Launderville

Montpelier, VT

Clara, age 17 mos., STARband since 8/10

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