After 3 healthy pregnancies, we were surprised to learn that baby number 4 showed signs of spina bifida at our 20-week ultrasound. In the weeks to follow, we had dozens of tests and ultrasounds as we explored our options, including fetal surgery. Ultimately, we made the decision to deliver our baby at Children's Hospital of Philadelphia and to have her closure surgery performed after birth.

Petra was diagnosed with Myelomeningocele, which is the most severe form of spina bifida. Petra's opening extended up to her T12 vertebrae, which is the lowest vertebrae in the thoracic section of the spine. As a result, she does not have feeling or movement in her legs. She will likely need a wheel chair throughout her life, but we do expect her to walk one day with some assistance. 

Petra amazes us constantly. She is feisty and full of joy. She army crawls across the house and handles her  wheelchair like a pro. 

We are excited to spread awareness of spina bifida and to raise funds for the Spina Bifida Association. SBA works to provide better opportunities for children and adults like Petra. The organization provides support, information, education, and advocacy. 

Today Petra sees specialists at a Pediatric Spina Bifida Clinic in Orlando, Florida, but there still remains a lack of clinics for adults living with spina bifida. As well, there remain research needs to address the medical needs of individuals with spina bifida. Your support helps the SBA advocate for better medical care as well as policies to help people with spina bifida live a full, active life.