The Nurse Called it 'Fred's ataxia' (Beth Bax: Friedreich's ataxia)

Article Highlights:
  • Beth Bax, of Altadena, Calif., has Friedreich’s ataxia and two children.
by on June 30, 2010 - 5:03pm

QUEST Vol. 17, No. 3

Beth Bax, 41
Altadena, Calif.
Friedreich’s ataxia

Like many young mothers with (and without) neuromuscular disease, Beth Bax discovered that pregnancy and childbirth can be a piece of cake compared to caring for a newborn.

Bax, a 41-year-old engineer, received a diagnosis of Friedreich’s ataxia (FA) in December 1999, at age 30. She’d been married two months before. Her speech was slurred and something was “off” with her balance — “I looked a little drunk probably,” she says — but she was not yet using a cane.

Beth Bax and her daughter

Bax gave birth to her first child in December 2001. The pregnancy was uneventful; her obstetrician researched FA and didn’t think it would affect the birth.

Bax had epidural anesthesia, and the birth went fine, other than the inappropriate behavior of the attending nurse. “I mentioned to her that I had FA, and she freaked out and ordered a baby warmer and extra nurses,” Bax said. “I didn’t want to calmly explain that I was not giving birth to the elephant baby while the nurse was telling everyone I had Fred’s ataxia. She never did get the name right.”

While FA didn’t have a big effect on Bax’s pregnancy or birth experience, it definitely affected her confidence as a new mother. “My husband ended up always carrying her because I needed my hands to grab the walls,” Bax says. “I played with her on beds and couches and didn’t carry her much at all.”

By the time of her second pregnancy, in the summer and fall of 2004, Bax had begun using a walking stick. (“They’re so much cooler than canes,” she reports.) She had extra visits with her neurologist at the University of California-Los Angeles, was able to exercise, and maintained good circulation and stable health. Doctors induced the birth, Bax had epidural anesthesia, and daughter Charlotte came out fine.

FA again complicated matters after the second baby was born, Bax says. “I did not carry her at all. I put her in a stroller just to move from room to room at my house. When she was 3-and-a-half months old, I was leaning down to pick up a baby sock off the floor, and I fell.”

Bax couldn’t get up. She’d broken her leg and torn her knee ligament, necessitating wearing a long leg cast for several months.  “It was very difficult,” she says. “My FA made my balance terrible, and now I had to balance on one leg.” She couldn’t drive, get in the shower without help, or walk down the steps to leave the house. She began using a wheelchair full time.

“Eventually, everything was fine but it took a while. We got a full-time nanny, we ramped the steps, and I learned to carry the baby on my lap as I moved forward with my free hand and my one good leg. We made adjustments and survived, but I never went back to walking. The muscles for standing and walking had atrophied, and I never wanted to be in a position where I might break a leg and be helpless again.”

Bax believes that having children probably sped up the course of her FA, but she has no regrets. Rather than thinking about symptoms and disease progression, “I spend a lot of time thinking about laundry, what we can eat for dinner, getting homework done, getting the house clean, which school my kids should go to, etc. I don’t have time to think about FA a lot. If I focused on all the problems I have, I think my FA symptoms would be more pronounced and I would be more depressed about it.”

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