Achieving All Her Goals (Stacy Wiparina: type 2 SMA)

Article Highlights:
  • Stacy Wiparina, of Dayton, Ohio, has type 2 spinal muscular atrophy and two children.
  • The birth of her children required special consideration due to the potential risks posed by her disease.
by Margaret Wahl, Amy Labbe and Miriam Davidson on June 30, 2010 - 4:58pm

QUEST Vol. 17, No. 3

Stacy Wiparina, 35
Dayton, Ohio
type 2 spinal muscular atrophy

Stacy Wiparina has never walked — never even crawled — but she’s achieved all the goals she set for herself as a child. “One was driving, another was college, another was having a career, another was having a husband, and the most important one of all was being a mother,” she says.

Stacy Wiparina and her baby on the day of the child's baptism

By the time she was in her early 20s, Wiparina had gone to college and learned to drive a van with joy stick computer control. She studied to be a school teacher, but had to abandon that career after contracting viral pneumonia from her students and spending three months in the hospital. “The doctor told me, ‘If you want to live, you better not teach,’” Wiparina said. She got a job in marketing instead.

Wiparina married her college sweetheart, a tire store manager, and the couple began to investigate the idea of having children. “I’d always been told, ‘You should never try to have kids, there’s no way,’” Wiparina said. “We were scared to death because we didn’t know anything.”

Wiparina contacted a high-risk obstetrician, David Colombo, at Ohio State University Medical Center in Columbus, who agreed to help her. He assembled a team, including an anesthesiologist and another high-risk obstetrician who had experience doing Caesarean deliveries under local anesthesia in Africa.

Wiparina had no problems conceiving, and her two pregnancies went fine, other than the babies growing to the left side of her belly, rather than to the front (a result of her scoliosis, or spinal curvature).

The births, unlike the pregnancies, required special consideration. Because of the spinal fusion Wiparina received at age 12 — “Otherwise I would have to lie down my whole life” — she could not get epidural anesthesia. Moreover, general anesthesia would be risky for a person with SMA.

Wiparina never went into labor, although it isn’t clear that her SMA had anything to do with that. She lacked the strength to push the baby out, and in any case, her pelvis was too small for the baby to pass through. When the time came, the doctors performed a Caesarean (C-section) using several dozen shots of local anesthetic as the only pain relief.

“I felt the first few shots,” Wiparina reports. “I didn’t look. Once they started to cut, I didn’t feel a whole lot, except for a really horrible sensation when they were putting my insides back in place.” The experience was frightening, Wiparina said, especially since she was wide awake the whole time.

Wiparina went through an identical procedure for the birth of her second child, but “it wasn’t as bad, because I knew what was coming.” Besides, she adds, lots of women have to go through more than 45 minutes of discomfort in order to give birth.

Since the birth of her second child, Wiparina has developed symptoms of a compressed cauda equina (a bundle of nerves at the base of the spine that looks like a horse’s tail). The cauda equina can become compressed in healthy women, but in Wiparina’s case, carrying two babies to term while sitting in a wheelchair almost certainly caused the condition.

Wiparina has now lost most sensation below her waist, and it’s doubtful it will ever return. Surgery might be able to correct the condition, but it’s too risky.

Wiparina doesn’t regret having children, though. She achieved her fondest dream and greatest goal, and if that’s the price she has to pay for it, she says, so be it.

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