New Life, New Challenges: Young Mom with Spina Bifida Grows with Kennedy Krieger

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Krystal Spencer with Her SonWhen Krystal Spencer came to Kennedy Krieger for her regular clinic visit in September, she couldn't resist showing off her baby son Justin. A Kennedy Krieger patient for more than a decade, Spencer is a familiar face to many of the physicians, nurses and therapists in the Outpatient department all of whom were thrilled to see that one of their patient had delivered a healthy baby boy.

Krystal, 22, was born with spina bifida, a birth defect that prevents the spine from closing completely during the first month of pregnancy. Occurring in about one of every 1000 live births each year, spina bifida can lead to paralysis, hydrocephalus and other brain malformations, bowel and bladder complications, seizures, chronic wounds and learning disabilities. In order to respond to this broad array of difficulties, Kennedy Krieger's Center for Spina Bifida and Related Conditions has established a team of experts in pediatrics, pediatric neurology and neurosurgery, pediatric urology, pediatric orthopedics, nursing, physical therapy, occupational therapy, neuropsychology and social work. Although the clinic focuses on pediatric patients, its professionals often continue to see patients as they enter adulthood in order to provide continuity of care.

Krystal has worked most closely with Pediatric Nurse Practitioner Kathy Kinsman, who is proud of the way her patient has embraced the responsibilities of motherhood. "Krystal hasn't always focused on her own care as much as she should," says Kinsman. "But carrying and raising Justin has really given her insight into why it's so important for her take care of herself now that she has a baby in her care."

According to Krystal, who uses a wheelchair, her pregnancy and Justin's first few months have been easier than she expected. She maintained her regular schedule until just a few weeks before Justin's birth. Since then, mom and baby are doing great. For now, Krystal is a stay-at-home mom, but as Justin gets older, she hopes to go where he goes. "If he starts preschool, I'll work there, then hopefully be able to move on and find a job wherever he goes to school after that," she says.

According to Kinsman, early adulthood is a crucial time in terms of maintaining the health of a person with spina bifida. "I believe 18 to 24 is the most critical age range for preventing major complications," she says. "At 18, many individuals really want to be independent, but the neuropsychological and memory issues associated with the disorder often prevent them from being aware of all the issues they need to manage. It's imperative to have a point person who's really familiar with all of their challenges."

It can be difficult for older children and adolescents with disabilities to learn about and access programs and resources designed for adults. Worried about many of his patients falling through the cracks at such an important time, Spina Bifida Center director Dr. Eric Levey created Kennedy Krieger's Transition Program for Adolescents with Disabilities. Geared to all people between the ages of 14 and 21 with disabilities, the program offers a monthly lecture series dedicated to adolescent transition topics such as Sex and Sexuality, Estate Planning, Vocational Training Options and Travel and Recreation.

"As children with disabilities approach adulthood, they can experience a lot of anxiety and depression as they come to terms with their disability," says Dr. Levey. "This program is designed to introduce them to the programs and services available to help adults with disabilities lead more productive, independent lives."

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