Our children and our children's children

[Guest guest]

In the last two weeks I have taken my daughter (age 8) to Hopkins (Baltimore)

and duPont (Wilmington, DE) for orthopedic evaluations. She has CMT type 2

which was determined on the basis of an EMG (electromyography) and a NCV

(nerve conduction velocity test). Virtually every doctor I've seen asks why

we haven't had additional tests or biopsies performed to home in on the

diagnosis.

Because my daughter is mine by adoption (and is from India) we do not have

access to her birth or family medical history, which is probably helpful in

diagnosing CMT. So, I do sympathize with these doctors who want to feel more

certain of the diagnosis. Still, I see no reason to subject my daughter to

additional tests, some of which are painful, if the benefits do not outweigh the

costs. I am always careful to ask if the alternative diagnoses (e.g. Distal

Spinal Muscular Atrophy) would make any difference in managing the disease.

They always say " No, but she might like to know so that, down the road, she

can decide whether or what she wants to do about having children herself. "

Well, at eight years of age, this does not seem to be a good enough reason

to have another EMG or a sural nerve biopsy. In another 20 years, they might

be able to get an accurate diagnosis by having her place her hand, palm down,

on a special magnetic pad that delivers a computerized read-out.

I have a more fundamental objection to this reason that she should be tested

so that she can decide whether to have children. Although I fully believe

in a woman's right to choose, indeed because I believe as much, my daughter

should make the decision to have these additional tests when she becomes a

WOMAN. But, while she is a child, what kind of message am I sending her by

having tests performed that will indicate whether she will pass her disease

on to her children? What does it say to her about the value of her life?

I hope she decides to have children someday so that she will know the joy that

she has brought to my life. I would see it as an affirmation that her own life

is worth living.

My daughter said it more beautifully than I. I was on my hands and knees

struggling to strap on her leg braces. We were fighting because she was

not cooperating, and Alice exploded in tears:

" Yeah, well how would you know. You don't have CMT. You don't have to wear

braces. "

I sat back on my legs and said, " You're right. I don't know. I wish I did. I

wish

I could wave a magic wand and make it go away. You know, honey, if a doctor

told

me that he could make you better but that the cure would cost a fortune, I would

sell our house and give that doctor every single penny we have to take away your

CMT. I would ...

" Um, Mom? "

" Yes? "

" If he took away my CMT, he would be taking away all my friends. "

" How's that? "

" Well, the CMT is part of who I am, and my friends like me for who I am. So,

like, it's okay, Mom. " Whereupon she resumed reading her Drew book as

she extended her foot, much like Cinderella awaiting her glass slipper.

Best wishes to all,

Barbara