Nylah Syed of Ontario, New York, has had about 20 surgeries in her 21 years of life. She has spina bifida, the nation's most common permanently disabling birth defect, which affects about 70,000 Americans. Spina bifida occurs in the womb when a child's spinal cord doesn't completely close, usually causing a level of paralysis, bowel and bladder issues, and hydrocephalus.

For many of those 21 years, Nylah received medical care at an exceptional pediatric spina bifida clinic in Rochester, New York. However, after turning 21, because of her age, she was no longer eligible to receive care there. She had to find an adult clinic, and so far has not found one with a well-coordinated team familiar with her disability. Her plight is common across America.

“Recently, I had a foray into the world of adult spina bifida medicine,” said 46-year-old Denise Syed, Nylah's mother, in a telephone interview.

Here was the situation: Not long ago, her daughter's stomach was distended, and she was in a great deal of pain. “It turned out her shunt (which fed excess brain fluid to her stomach cavity) had stopped working,” said Denise.

She needed a new shunt. Because Nylah was now officially an adult, Denise couldn't sign off on the surgery. Nylah had to make that decision herself.

Said Denise, “She was afraid. She'd never had the responsibility of consenting. This particular surgery of moving the shunt to (empty into) the heart was risky, and scary, especially given that her brother had a heart transplant only five years ago.”

As stated, Nylah, because of her age, had lost her pediatric clinic and neurosurgeon, and the adult neurosurgeon available didn't have as much experience installing shunts. Fortunately for Nylah, her old pediatric surgeon did the surgery as a favor.

For people with complicated disabilities requiring constant attention, the U.S. has many specialty pediatric clinics that have collaborating doctors working together to solve problems. But there are now only a handful of these specialty clinics for adults, and as we all know, children become adults.

In Nylah's case, Rochester recently started an adult spina bifida clinic. But it has only one doctor rather than a well-coordinated team of specialists.

Said Denise, “Kids like Nylah who have many medical needs are living longer, and the medical community isn't prepared to deal with their health issues. Nylah isn't the only one.”

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