‘A Mother With A Disability Is Worth Having’ - The Missourian: Features People

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‘A Mother With A Disability Is Worth Having’

Daughter of Woman Born With Spina Bifida Shares Their Life Experiences

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Posted: Saturday, June 22, 2013 12:00 am

Back in November 1965, the St. Louis Globe-Democrat ran an article about a March of Dimes birth defects treatment center at St. Louis Children’s Hospital titled, “A Baby With a Defect Is Worth Having.”

Theresa Gargus Borgmann, a 2004 graduate of Owensville High School, takes that perspective a step further and says, “A Mother With a Disability Is Worth Having.”

Borgmann’s mother, Sandy Claas Gargus, who passed away in March, was born with spina bifida, which means “split spine.” It is a permanently disabling birth defect that occurs when a baby is in the womb and the spinal column does not close all of the way.

Gargus was featured in that 1965 Globe-Democrat article as one of the children who had been treated at the March of Dimes center with successful spinal surgery and a “shunt” operation to relieve pressure on her brain from hydrocephalus (fluid on the brain). She was 22 months old then.

Any woman who has been pregnant may remember that they were told to take a vitamin with a certain amount of folic acid in it to help prevent the baby from being born with spina bifida. That knowledge came about through research funded by the March of Dimes.

Still, spina bifida is the most common permanent disability birth defect in the United States, according to the Spina Bifida Association website, which also notes, “Every day, about eight babies in the United Sates are born with spina bifida or a similar birth defect of the brain and spine.”

There is no known cause of spina bifida, although scientists believe that both genetic and environmental factors act together to cause it, the website notes.

There are different types of spina bifida, each with varying levels of severity. Gargus was born Dec. 31, 1963, with meningomyelocele, also known as spina bifida cystica.

“This is the most severe form,” the website reads. “It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities.”

Gargus was born with a spot right in the middle of her back that was scarred from where they closed it up, said Borgmann. But she fared better than many children at the time born with spina bifida.

“Most babies with spina bifida didn’t walk,” she commented. “My grandmother worked with her . . . worked her legs and built up her muscles so she could,” said Borgmann.

Poster Child for March of Dimes

At one time, Gargus was a poster child for the March of Dimes, but that ended because she started to appear “too healthy,” Borgmann noted.

That isn’t to say that Gargus didn’t struggle. She had leg braces for a while and was in a full cast from the waist down for a while. She had 59 surgeries in 49 years — from putting in a central line (to make repeatedly putting in an IV easier on her) to major surgery, said Borgmann.

She wasn’t supposed to have any feeling below the waist, but she had enough feeling to walk, even if her balance was not great.

“She did everything with me that a normal mom would do with their kid,” said Borgmann. “She rode bikes with me. She played catch, Frisbee. Everything that I wanted to do, she did.

“Even if it caused her pain, or she wasn’t good at it.”

At the same time, Borgmann admits having a mother with a disability forced her to grow up fast. Many times the roles were reversed and Borgmann was caring for her mother.

“I’d say when I was in fifth grade is when she stopped being able to help me with my homework,” said Borgmann.

Yet she never stopped teaching her life lessons.

“(Mom) taught me there will be times when no one else is going to stick up for you, and you have to do it for yourself,” Borgmann remarked, recalling an incident in school when she was being bullied.

In high school, Borgmann walked a line between teen and adult. She was in a band and had fun that way, but she also worked. She had a job in the cafeteria at then-St. John’s Mercy Hospital in Washington five to six days a week from the time she was 16 until she graduated high school.

“(Mom) was better when I was older, Borgmann recalled. “When I was in elementary school she was sicker.

“I always knew when I was little that my mom could die. I didn’t know that that was any different from anyone else’s mom.

“It wasn’t until I got older that I realized not everybody has to deal with that.”

Borgmann can remember having to make her own lunch as a child because her mom was too sick to do it, but she also remembers all of the events her mom attended to support her.

“I played ball when I was little, and she came to all of the games that she could. When I started in band . . . she came to every concert that she could, all the way through college and beyond.”

Borgmann’s parents divorced when she was still very young and after that they lived with her grandmother for a while before getting a place on their own in Gerald.

“(Mom) was very social. I never wanted for people to play with . . . I never wanted for friends,” Borgmann recalled. “She had lots of friends and still went out.

“She drove. She loved her car.”

Her Life Was a Series of Miracles

Doctors had told Gargus they didn’t think she could have children and also that she probably shouldn’t because it would be too much strain on her body. So when she became pregnant, it was a surprise to everyone.

Borgmann was born two months early at home. She was 4 pounds, 10 ounces, but otherwise perfectly healthy.

“The story was that she was so sick at that point, that her body was starting to shut down, and the first thing it got rid of was the baby,” said Borgmann.

Looking back, Borgmann says so much of her mom’s life seems like a miracle, including a car accident where she fell asleep at the wheel and her car rolled 17 times, at some point throwing Gargus from the car.

“She just fell out of the window . . . and walked away from it,” said Borgmann. “Who does that?”

Another time was in 2006. Borgmann was away at college and received a call that her mom was in a coma in septic shock, a medical condition that results from a severe infection.

While her mom was being transported from the hospital in Washington to one in St. Louis, she “died three times” in the helicopter, said Borgmann.

“They revived her three times. She was in a coma and they told us to start making funeral arrangements because she wasn’t responding to any stimuli.”

The family was doing just that when she suddenly came out of the coma, said Borgmann. Then they were told she would be in the hospital recovering for six to eight months, but one month later she was at home already.

There was no explanation for what brought her out of the coma or sped her recovery, said Borgmann.

Gargus passed away on St. Patrick’s Day this year.

She had been having kidney and bladder problems in August 2011, which led to the discovery that she had bladder cancer and that it had spread to other organs and bones. When she was told the news that she had metastatic cancer, she didn’t think it was a big deal, said Borgmann.

“ ‘That’s just one more thing I’ll have to deal with,’ she said.”

‘Disabled People Can Be Mothers’

In sharing the story of her mother’s life, Borgmann said she hopes people will realize what she has known all of her life — there is value to all people, even if they have a disability.

“When you see people anywhere who are disabled. You label that person . . . I just want people to know that disabled people can be mothers, they can be an important part of someone’s life.”

And even though her childhood was hard at times, her life has value too.

“I was the first person in our family to graduate from college,” Borgmann said, proudly.

Now living in Monet, just south of Springfield, Borgmann is married to Todd Borgmann, son of Wayne and Kara Borgmann, formerly of Washington, now of Cassville.

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