A newsmaker you should know: Mother works to help families affected by spina bifida

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Adele Duffy, executive director of the Spina Bifida Association of Western Pennsylvania, described new board member Melanie Dragovits as "a person with a gentle soul."

With that gentle soul, Mrs. Dragovits is helping other families who, like her own, have a child or family member with spina bifida.

Despite an overwhelming schedule, Mrs. Dragovits finds time to serve in her new role as a board member for the association, headquartered in Marshall.

"She could easily say she has too much to do and it would be true, but instead she said she wants to do more to help," Mrs. Duffy said.

Mrs. Dragovits' experience with spina bifida began when her younger daughter, Elizabeth, now 7, was diagnosed with the condition before she was born.

"When I was 18 weeks pregnant, I had routine blood work that showed something was wrong," Mrs. Dragovits said. At the time, the blood work results were inconclusive and Mrs. Dragovits said her doctor didn't even call her until a week later to suggest more tests.

"Then they did an ultrasound and knew something was wrong," she said.

When Elizabeth was born, she had spina bifida and hydrocephalus, a common condition with spina bifida. She also had Arnold Chiari Malformation, a structural defect of the brain.

"While about 95 percent of babies with spina bifida have hydrocephalus, less than 2 percent will have Arnold Chiari Malformation," Mrs. Dragovits said.

Mrs. Dragovits and her husband Matt were living in Florida with their daughter Angeline when Elizabeth was born, and they decided to move to an area where hospitals were better equipped to help them with the long-term care that Elizabeth would require. Since they had family members in Cranberry, they chose that area.

"My sister called me and said, 'Coincidently, the Spina Bifida Association is located really close to us,' " she said.

Mrs. Dragovits had been involved with the Spina Bifida Association in Florida, so she got in touch with the local chapter even before she moved here, establishing contacts and resources.

After she moved to Cranberry in November 2010, she enrolled Elizabeth in the association's BluePrints Preschool Play Program.

"We got involved right away," she said.

Mrs. Dragovits also started a support group for caretakers, a program now offered by the association in partnership with National Rehab, a supplier of medical products.

The past few months have been hectic for the Dragovits family. Elizabeth had to have emergency surgery and then a second surgery. The family also just moved into a new home in Cranberry, and Mr. Dragovits is traveling quite a bit.

"When I found this home that had an elevator, I said, 'I'm sorry, Matt, but we are moving,' " Mrs. Dragovits said.

Elizabeth can walk but often uses a wheelchair. She attends first grade at Rowan Elementary School when her health permits.

The Dragovits own a video production company called Creative Force Video Productions, which specializes in patient, hospital and continuing medical education programming. A few years ago, the couple produced "Breath of Life: A Caregiver's Guide to Pediatric Tracheotomy Care," that started with their own story.

"When I learned that Elizabeth would have a [tracheotomy] and I would have to take care of it, I was extremely nervous. We thought the video could help other families," she said.

The video and others produced by Creative Force are used all over the world.

Over the years, Mrs. Dragovits has taken college courses in the medical field due to her personal interest and to help her advocate for Elizabeth.

""It is important to know and understand what the doctors are saying and to act as an advocate for your child," she said.

Although the exact cause of spina bifida is unknown, there are indications that it may run in some families and be caused by low folic acid in the mother's diet.

"It looks like it is a mixture of environment and genetics," Mrs. Dragovits said.

Mrs. Dragovits said the doctors put her on a high dosage of folic acid supplements even before she became pregnant with a son, who is due in July.

"Of course, I did everything right when I was pregnant with Elizabeth -- I don't even drink caffeine when I am pregnant, but we didn't want to take any chances," she said. Mrs. Dragovits said she "held her breath" until medical tests indicated the baby boy did not have spina bifida.

In her new role with the board, Mrs. Dragovits hopes to continue to help other families.

"Until you have a medically fragile child yourself, you never understand what the parents and families go through," she said.

Mrs. Dragovits said her older daughter, Angelina, is particularly compassionate to others, including those with disabilities. "She just doesn't see people as different," she said.

Mrs. Dragovits said she hopes people realize children with spina bifida are just like other children.

Elizabeth doesn't complain at all, she said. "So many people could really learn from her."


Kathleen Ganster, freelance writer: suburbanliving@post-gazette.com. First Published June 13, 2013 8:30 AM


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