Families Affected by Spina Bifida Helped by Involved Mother
Aug 15, 2013
The Dragovits family knows firsthand the unique joys and challenges that come with raising a child with spina bifida. Through her journey with her now seven-year-old daughter, Elizabeth, Melanie Dragovits has found her calling in helping other families adjust to and learn how to care for a child with the condition.
The Dragovits learned of Elizabeth’s diagnosis before she was born. The family already had one daughter, Angeline, and the family lived in Florida.
“When I was 18 weeks pregnant, I had routine blood work that showed something was wrong,” Mrs. Dragovits said. “Then they did an ultrasound and knew something was wrong.”
Elizabeth had spina bifida and hydrocephalus, which is a common condition that coincides 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 two percent will have Arnold Chiari Malformation,” Mrs. Dragovits said.
After the birth of Elizabeth, the Dragovits decided to move to an area that had better access to hospitals and specialists to help their daughter. They already had family in western Pennsylvania, close to the Spina Bifida Association located there. Having been involved with the Florida chapter, Mrs. Dragovits wasted no time in getting involved.
In November of 2010, she enrolled Elizabeth in the association’s BluePrints Preschool Play Program, and shortly after she started a support group for caretakers. The support group is now offered by the Spina Bifida Association in partnership with National Rehab, which supplies medical products.
Today, she is a board member for the Spina Bifida Association for Western Pennsylvania, and she’s described by the executive director, Adele Duffy, as “a person with a gentle soul.”
“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.
The Dragovits are staying very busy. A new baby boy is on the way, and recent tests showed that he does not have spina bifida, which is thought to be partially genetic and partially environmental. It is often associated with low maternal folic acid, so as a precaution, Mrs. Dragovits was given high doses of folic acid as a supplement to take prior to becoming pregnant with her son.
The couple also runs Creative Force Video Productions, which specializes in patient, hospital, and continuing medical education programming. The couple first produced Breath of Life: A Caregiver’s Guide to Pediatric Tracheotomy Care when they learned Elizabeth would need to have a tracheotomy and they would have to take care of it. They hoped the video would help other families.
“Until you have a medically fragile child yourself, you never understand what the parents and families go through,” she said.
Watch a segment of the half-hour video these loving parents produced. What do you think it is that encourages some people to go above and beyond, even when coping with a disability that might be theirs or someone in their care?