If your child had cancer or a congenital heart defect, you'd probably look to family and friends for emotional support. But there's one birth defect parents are reluctant to discuss: pelvic disorders.
Seattle Children's has one of the few specialty clinics in the country that treats these disorders.
Fixing her pet snail was much easier that fixing Bethany
"She's up to 10 surgeries now," said Richard Church, Bethany's dad.. "She had 9 by the time she was five."
"Nobody talks about it, so this is a very socially isolating problem and also very socially devastating for the children," said
Dr. Jeffrey Avansino, Seattle Children's.
Brittany was born without an opening at the end of her digestive tract. She needed a colostomy at birth.
"It's essentially a bowel obstruction and if you didn't do anything with that it would be a non-survivable condition," said Dr. Avansino.
Improving her quality of would prove to be much more challenging. One family from Oregon was running out of options until they found Seattle Children's.
"Up until about eight months ago, we were thinking we might have to catheterize her all the time for the rest of her life," said Bethany's dad.
"We can do a lot of things for people, both surgically and non-surgically, but the main question is how to we improve their quality of life and not just the quality of life of the child, but the quality of life of the family," said Dr. Avansino.
A small device near Bethany's pelvis is connected to an internal tube that allows her to flush out her colon everyday so she has more freedom just to be a kid.
"She's the most wonderful girl," said Bethany's dad. "Most of the time you wouldn't know there's anything different about her."
About half the children with pelvic disorders have other issues as well, such as spinal cord abnormalities, kidney malformations and heart defects.
Seattle Children's Reconstructive Pelvic Medicine Clinic is one of the few of its kind in the country and the only one on the West Coast.
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