Good Beginnings 15: Mother Learns Learns Important Lessons From Daughter with Spina Bifida

When mid-way through her pregnancy, Nicte Mack found out that her baby would be born with spina bifida, she was devastated.

“I told my older daughter, Diana, that I had failed in my efforts to give her a playmate,” Mack said. “I knew that my baby would never be able to run or jump or do many of the things that typical children do.”

But more than 4 years later, Mack says Lourdes has proven not only to be a wonderful companion to Diana, but also an inspiration to everyone she meets. First 5 LA introduce to this extraordinary child and the challenges she and her family face.

Active and determined, Lourdes’ big smile hides the pain of multiple surgeries, reliance on a wheelchair or walker, and almost daily therapy. Her ordeal is shared by the 70,000 individuals living with spina bifida, the most common permanently disabling birth defect in the U.S.

Although her daughter’s physical challenges are numerous, Mack says the emotional and social problems issues can be even more overwhelming.

“It’s been tough dealing with repeated stares and prying questions from people who don’t understand what spina bifida is,” said Mack.

An educational tool that she has found helpful to both Lourdes and other children, teachers, relatives, and friends, is Right Under My Nose, the first book in Spanish and English for children with spina bifida.

First 5 LA-funded educational and support program for children and families with spina bifida.

To prevent spina bifida, doctors recommend women at risk for getting pregnant take at least 40 mcg of folic acid per day. Doctors say it can take several months for adequate stores to be built up in your body to protect your baby. So don’t wait until you’re pregnant. Check to make sure your multi vitamins has all the folic acid you need.

If you’re dealing with a disability in your child, here are five tips to help them become more independent:

1. Break tasks into steps
2. Match tools to abilities
3. Allow extra time
4. Set realistic expectations
5. Get everyone involved

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