Birth Trauma / Medical Malpractice

Date: 11/3/2008 4:00 AM

By YVONNE BETOWT
The Huntsville Times


HUNTSVILLE, Ala. (AP) — On a recent Brownie outing to earn a disability awareness badge, Trish Switzer let her troop choose from blindfolds, ear plugs, leg weights, wheelchairs and walkers so they could be “disabled” during a scavenger hunt.

“After all the girls made their choices, (her daughter) Sarah said: ‘I want a disability,'” said Switzer with a laugh.

Sarah, 9, was born with spina bifida and walks with the help of braces on the lower parts of her legs. But she doesn’t accept the fact she is disabled.

Spina bifida is an opening in the spinal cord that causes full or partial paralysis, nervous system complications, bladder and bowel control problems, learning disabilities, depression and other issues.

The condition affects 70,000 Americans and was once considered a death sentence. But many, like Sarah, are leading near-normal lives.

Today, a pink Barbie wheelchair helps Sarah go long distances. She also is constantly accompanied by her Canine Companion dog, Bakari.

The Heritage Elementary School third-grader also enjoys water skiing, bowling and horseback riding.

After learning about Sarah’s birth defect, the Switzers had little time to mourn. That day they were told about an experimental fetal surgery in which doctors take the baby from the womb, perform the operation to close the opening in the spine, and return the baby to the womb so it can continue developing.

The surgeries took place on July 1, 1999, at Vanderbilt in Nashville. Sarah was born again on Aug. 22.

Trish and Sarah were featured in Life magazine because of the risky pioneering procedure.

Today, the surgery is still performed, both before and after birth, but the verdict is still out on which provides the best results. A study is under way by the National Institute of Child Heath and Human Development to determine the most beneficial surgery to prevent problems associated with spina bifida.

When the Switzers first learned Sarah had spina bifida, their world was shattered, along with Bob and Judy Switzer, Sarah’s paternal grandparents.

Several decades ago, Judy Switzer was a nurse at Johns Hopkins Hospital in Baltimore where she saw many babies with spina bifida.

“No one knew much about it 50 years ago,” she said. “Many babies with it went home and became infected and died.”

Her husband, Bob Switzer, said the news was “devastating” at first.

But now he and Judy, who moved to Madison to be near their only grandchild, are enjoying watching Sarah grow and take part in a variety of activities.

“She recently water skied for 16 miles without stopping,” said the proud grandfather. “Sarah knows what she can and can’t do.”

Trish Switzer had never heard of spina bifida until she became pregnant with Sarah.

“I was as healthy as you could be,” said Switzer, who was 35 when Sarah was born. “I did everything I was supposed to do (to have a healthy child). I took folic acid, ate healthy and exercised.”

Folic acid, a vitamin B supplement doctors recommend to reduce the risk of brain-related problems such as spina bifida/hydrocephalus (fluid on the brain), didn’t work in Switzer’s case.

But as president of the Spina Bifida Association of Alabama, Switzer is still a big advocate of folic acid which is used to make the extra blood needed during pregnancy and creates healthy cells.

“Folic acid is not a 100 percent guarantee to prevent birth defects,” said Switzer, who is trying to educate the public about the debilitating condition during October, Spina Bifida Awareness Month. “But we believe it reduces some of the problems that can occur during a pregnancy.”

Dr. Debra Williams with the Madison County Health Department agrees.

“Every woman of pregnancy age should be taking folic acid each day,” said Williams. “It can prevent neural tube defects such as spina bifida or any disease that is brain related.”

According to the Spina Bifida Association of America, the exact cause of spina bifida is not known, but genetics and environmental factors do play a part in causing the condition that affects one of every 1,000 newborns in the U.S.

While it was almost a certain death sentence 30 years ago, today 80 to 90 percent of infants born with spina bifida survive and live a normal life expectancy.

After moving from England where her husband, Michael, was stationed with the U.S. Army, to Madison in 2005, Switzer attempted to find support for the family as it maneuvered the difficult maze of disability.

One of the first people Switzer met was Bill Whatley of Huntsville, believed to be the oldest active person with spina bifida in the United States at age 78. Now retired, Whatley was head of Huntsville Aviation for three decades. He continues to be a local, state and national advocate for the condition which nearly claimed his life as a child.

The Switzers and Whatley have become close friends since meeting three years ago.

Whatley calls Sarah a “miracle child.”

He should know. He’s living proof miracles happen.

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Information from: The Huntsville Times, http://www.al.com/hsvtimes/hsv.html

Copyright 2008 The Associated Press.