Eleven-year-old Ashley’s mom says her daughter has a resiliency that other kids her age don’t possess.
In 2005, her baby was born with her intestines outside of her body. The newborn’s life was filled with surgeries, special transfusions and antibiotics to keep her alive.
“It seemed so unfair that such a tiny person would have to endure so much, but she was a fighter…,” her mom, Kayte wrote in a post shared on the Centers for Disease Control and Prevention’s website.
“I will never forget the way she looked at the sky with silent awe the first day she finally left the neonatal intensive care unit, or how scary it was at first to have her home without the constant beeping of machines to monitor her,” she said.
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Kayte and Ashley’s story is only one in a handful the CDC is showcasing in its series called Living with Gastroschisis.
On Friday, the U.S. health agency published a report that warns that the rare birth defect increased by 30 per cent between 2006 and 2012 compared to 1995 and 2005. About 2,000 U.S. babies are born with gastroschisis each year.
Canadian research suggests that the defect occurs in about one in 2,200 pregnancies.
Babies with gastroschisis are born with their intestines coming out of their body through an opening in the abdominal wall. Sometimes other organs, such as the stomach and the liver, may also be involved, the CDC says.
“It concerns us that we don’t know why more babies are being born with this serious birth defect. Public health research is urgently needed to figure out the cause and why certain women are at higher risk of having a baby born with gastroschisis,” Dr. Coleen Boyle, director of the CDC’s National Center on Birth Defects and Developmental Disabilities, said.
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In their study, the researchers combed over data from 14 states and compared rates of the rare defect from 1995 to 2005 and 2006 to 2012.
Turns out, the prevalence more than doubled in the country. Most cases occurred in moms who were younger than 20.
Babies recover from the condition – as the CDC’s highlighted profiles explain. They go through surgery to return the organs into the body and repair the abdominal wall.
But after that, the kids grapple with a lifetime of problems with eating or digesting food.
READ MORE: Canadian doctors launch rare disease database
In Ashley’s case, she’s smaller than other children, which is normal, Kayte explained. She’s also hearing impaired from an additional birth defect.
“She will always be at risk of intestinal kinks and blockages, which makes every stomach bug or tummy ache a worry,” Kayte wrote.
“Although her life was initially filled with challenges, Ashley is blossoming into a remarkable young girl who has inspired countless other gastroschisis families with her story.
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Read more of these stories here and read the CDC’s full report on gastroschisis here.