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November 21, 2014

County to mark Wednesday for toddler with rare disease

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Posted: Thursday, July 24, 2014 2:05 pm

Two-year-old Gracie Kilgore perched on an armchair Wednesday, her strawberry-blonde curls bouncing with her movements, as she told her mama she had to use the potty.

Her mom, Haley Kilgore, knowing when 2-year-olds say they have to use the potty, they mean now, dropped the things in her hands onto her chair. She grabbed a three-pound backpack connected to her daughter by an intravenous line, took her daughter’s hand and led the way to the bathroom.

Gracie was born with a birth defect known as gastroschisis, characterized by a defect in the abdominal wall that allows the intestines to stick out of the body cavity. The backpack holds a pump which provides vital nutrients, electrolytes, everything her intestines can’t ab sorb, Haley said. Having it in the small back pack, gives Gracie some mobility, Haley said.

The family approached the Cleburne County Commission on Monday about having July 30 declared Gracie’s Gastroschisis Day.

“I just wanted to spread some awareness,” Haley said.

Children who live with gastroschisis live entirely different lives than the average child. Gracie for instance can’t go swimming or take a bath. Her pump, which her mom calls her lifeline, can’t get wet. She can’t be out in hot weather for a long period of time because her medi cine needs to stay at room temperature. Haley’s and her husband Charles’ daily schedules have to revolve around their daughter’s medicine schedule, she said.

Gastroschisis

Haley found out her child had the defect when she was six months preg nant, she said. She had a routine blood test that showed a high protein lev el. An ultrasound revealed gastroschisis, a defect af fecting one in 2,229 births.

Gracie’s very small hole allowed a portion of the in testines out and cut off the blood flow, Haley said. So, the day after Gracie was born, she had surgery to remove a large portion of her intestines that had been killed by lack of oxygen and nutrients, Haley said.

It was the first of 19 sur geries Gracie has under gone in her two years and she still faces more in the future, her mom said. The family is hoping to visit Boston Children’s Hospital to get a second opinion on the small intestine trans plant that Gracie’s doctors in Birmingham are recom mending, she said.

Meghan Hall, chief ex ecutive officer and founder of Avery’s Angels Gastro schisis Foundation, said the defect is on the rise in the United States. In the early 2000s it affected one in every 10,000 births; in 2008 one in every 5,000 and in 2011 one in every 2,229, she said.

“The CDC doesn’t know exactly what causes it,” Hall said.

The defect has correla tions with antibiotics used to treat for urinary tract in fections, with serotonin in hibitor use and exposure to atrazine, she said, adding that a correlation doesn’t mean any of these cause the defect.

Prognosis

The defect is treatable and has a 95 percent sur vival rate in first-world countries like the United States. About 30 to 40 per cent of children born with gastroschisis have long term issues like Haley is experiencing, Hall said.

For most though, the procedure is to push the intestine back in the body after birth and close up the hole. Once the children are eating and digesting their food, they’re sent home from the hospital. The children may need more surgery later to fix a small problem like a kink in the intestine, she said.

But the amniotic fluid in a mother’s womb is not a hospitable fluid for organs that come into contact with it, Hall said.

The extent of the dam age to the intestines isn’t known until the baby is born. Her own son, Avery, had a good prognosis but died after a surgery to re move a second portion of his intestine that had died. He was just 107 days old when he died on July 30, she said.

Since then, Hall has been working to give other fam ilies the support she and her family didn’t have.

“At the time, there were no foundations,” Hall said. “There were no websites. There was no centralized form of support.”

She started Avery’s An gels, a non profit, all-vol unteer agency, so that no other family would have to go through what they did alone, Hall said.

The foundation provides care packages to families expecting a child with gas troschisis including socks, mittens, snap-front onsies and blankets. It provides information about the de fect and advice on how to feel connected to the peo ple taking care of affected children, she said. Hall also provides bereavement sup port personally, she said.

In the five years since the foundation started, it has served between 4,000 and 5,000 families, Hall said.

Gracie is receiving help from United Cerebral Pal sy, which is providing eat ing therapy, her mom said. Since Gracie was in the neonatal intensive care unit so often, she never learned to eat the way other chil dren do.

“She takes nibbles and bites of stuff, but nowhere near what she needs to sur vive,” Haley said.

Gracie sometimes chokes on food and won’t eat for days afterwards, Haley said. The eating therapy is designed to help her overcome that, she said.

Haley said the communi ty has been very supportive of her family. The Kilgore family has been the recipi ent of community fundrais ers, one of which helped pay for Gracie to travel to Oklahoma for one of her surgeries, she said.

July 30 is Gastroschisis Awareness Day in Ala bama and Gracie’s Gas troschisis Day in Cleburne County.

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