EXERCISES: Benal Ortman, 7, exercises on the balance beam with help from her mother, Katie (right) and Eva Cole during a gymnastics class at the Peru YMCA. (KT photo by Shawn Knapp)

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Growing pains
By JULIANNE TAYLOR
Tribune staff writer
Saturday, January 01, 2005

Spina bifida.

Many an expectant mother hears those words, but few understand what they mean. Women who may become pregnant are cautioned to take plenty of folic acid, so as not to have a baby afflicted with spina bifida.

Women who take 400 micrograms of folic acid every day before they become pregnant reduce their risk of having a child with spina bifida by as much as 70 percent, according to the Spina Bifida Association of America.

But what exactly is spina bifida? And, why should women be concerned about it? The medical term for spina bifida is myelomeningocele. Spina bifida is a neural tube birth defect that happens in the first month of pregnancy when the spinal column doesn't close completely.

Spina bifida facts:
Occurs in 3,000 pregnancies each year in America and affects each person differently.

Up to 90 percent of children with the worst form of spina bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a shunt that helps drain the fluid. The shunt stays in place for life.

Other conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy and social and sexual issues. For more information on Spina Bifida, visit the Spina Bifida Association of America at www.sbaa.org.

Source: Spina Bifida Association of America, www.sbaa.org.

How do they know?

Ashley Kersh-Fletcher was 19 when she found out she was pregnant with her first child. Although she was surprised, Kersh-Fletcher said, she was excited to be a new mother.

"During the pregnancy, my doctor told me my baby had a cyst on his back," she said. "He told me not to worry about it, that when the baby was born, the cyst would be removed."

In order to not disturb the cyst, Nick was born by caesarian section on June 1, 1992.

"After the surgery, I was told Nick had spina bifida and he would never be able to walk or do a lot of other things," Kersh-Fletcher said. "I had no idea what spina bifida was, but I thought, 'How do they know what my son will or will not be able to do?'"

Nick began walking at age 3, and he hasn't stopped since, thanks to 11 surgeries on his back and legs, she said. This past summer, Nick spent the whole summer recovering from surgery. Kersh-Fletcher said he had rods put in his back to help straighten it and help him walk better due to scoliosis.

"Everything that has been done, has kept him walking," she said. "I've always encouraged him to try new things," she said. "I don't hold him back. He's had some broken bones, but he's been all right."

Kersh-Fletcher said although Nick has one of the worst kinds of spina bifida, he is in the top 1 percent for his condition. He is a healthy 12-year-old boy, who can do just about anything - with limitations, she said.

"He's a typical 12-year-old," she said. "He loves to be with his friends, tease his little sister, and ask for money."

In an effort to meet other parents of children with spina bifida and to provide support, Kersh-Fletcher developed a Web site, www.geocities.com/enchantedforest/cottage/1109, which tells Nick's story and provides useful information and links to other sites. In addition, she has started a spina bifida family support group in Peru, which meets the second Saturday of each month.

Karlee Rose

Although Kersh-Fletcher didn't know her son had spina bifida until he was born, it was different for Brad and Katie Ortman of Peru.

"We were able to prepare for it," Brad said. "We did a lot of research and talked to people about it."

Katie said they had two weeks before termination of the pregnancy was not an option.

"A genetic counselor told us whatever decision we made we wouldn't be judged for it," she said. "But everything we found in our research told us a person with spina bifida can still have a good, full life. People with spina bifida can get married and have children; they can have a pretty normal life, they just can't do as much as other people."

After serious consideration, the Ortmans decided to go through with the pregnancy and Karlee Rose was born Oct. 2, 1995. When she was born, she had water on the brain and a shunt was surgically put in to drain the fluid off her brain.

However, when Karlee Rose was almost 4 years old, she died. Katie said they aren't sure why she died, but they think she may have had a stroke. Katie said Karlee Rose had cerebral palsy symptoms and Arnold Chiari malformation, causing her to lose the ability to breathe and swallow on her own.

She said Karlee Rose had a feeding tube; she had club feet and her hips were dislocated.

"Mentally, nothing was wrong with her," she said. "She was a wonderful, funny child."

Benal and Nikki

After Karlee Rose died, Brad and Katie said they wanted to find a way to help children with disabilities.

"That's when we decided to go to Bulgaria and adopt a child with physical disabilities," Katie said. "When we met Benal for the first time, she was the darling of the orphanage. She had a lesion on her back, which had never been fixed. She had received no medical care and she was 3 years old."

Usually it takes one year to adopt a child from Bulgaria, but after getting doctors and congressmen involved, the Ortmans were able to take Benal home in six months.

"It was worse than being pregnant, because with Benal, we were afraid she wouldn't make it," Katie said.

Now, a bouncy 6-year-old first-grader, Benal is still the darling of her school, wherever she goes, the Ortmans said.

"That was her mode of survival in the orphanage," Brad said. "They had her in a high chair, so no one would bump her lesion. She couldn't reach anything, so she had to charm everyone to get what she wanted."

A few years later, the Ortmans returned to Bulgaria to take photos of orphans to post on the Internet.

"When we adopted Benal, we were able to look at photos of orphans on the Internet, but then they stopped doing that," Brad said. "We wanted to do something to help these kids get adopted."

When they went back to Bulgaria, Katie said, they had not intention of adopting another child, but when they saw Nikki, they couldn't leave her.

"She was in a room by herself and she couldn't see or hear," she said. "She just laid there and screamed."

"What would you do if you were like that for two-and-a-half years?" Brad said.

The Ortmans said she had one toy in the room and her diaper was changed once a day. When they were able to take her home a year later, they worried about taking her on the airplane, and how long it would be before they saw her smile.

"After a few minutes on the airplane, she was smiling and laughing," Brad said. "Her whole life she had been stuck in a room by herself. On the airplane there was so many things to take her attention."

When they first brought her home, one side of Nikki's head was flat, because she would lay in the same position for hours at a time.

"Now we lose her in the house, she crawls so fast," Brad said.

Both Benal and Nikki are in wheelchairs, but both of them have physical therapy sessions to help them exercise their leg muscles. Benal has no sensation in one leg from the knee down and no sensation in the other leg from the hip down. Nikki has no sensation at all in one leg, but the other leg is fine.

Although both girls do not use their legs, they are actively involved in several activities. Each week, Benal attends a gymnastics class, where she has learned to "flip" out of her chair, a skill she is very proud of.

"She's a typical kid, but her legs don't work," Katie said. "Sometimes, I'm not sure she knows anything is wrong with her."

Katie said sometimes it is challenging to communicate with Nikki, but she "blossoms every day."

"We're not sure how much she hears, if at all," she said. "Her vision is far-sighted, which is hereditary."

Brad said although his children have physical disabilities, "they are still kids."

"It's a miracle these kids survived as long as they did," he said.

The most difficult thing both families have had to get used to is altering activities for their children. Kersh-Fletcher said when her family goes somewhere, they have to think about how much walking they have to do, because Nick tires easily. When the Ortmans go places, they need to consider wheelchair accessibility and handicap parking.

"The biggest change is how to get the chairs where they need to go and where to park," Brad said.

For more information on Spina Bifida, visit the Spina Bifida Association of America at www.sbaa.org.


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