SA family shares struggles dealing with spina bifida

Family supports FDA's decision to add folic acid to corn masa flour

SAN ANTONIO – The words the doctor said when her daughter was delivered still ring through her head like they happened yesterday. 

"This child has a defect."

"I had no idea what that meant, I was clueless, scared," describes mother Jacqueline Perez.

Jacqueline Perez's soon learned that her daughter, Vivian, was born with spina bifida. Perez listened as medical professionals worked to explain so she could understand.

"The nurse pulled me aside and started explaining to me what the defect was and where it was and what it could mean."

"Then our lives just changed from that point. It was one of these very emotional, traumatizing, life changing experiences," described father Frank Perez.

During Vivian's first 12 hours,  she underwent brain and spinal repair surgery.

According to the Spina Bifida Association, she isn't alone. An estimated eight babies are born with spina bifida or a similar brain or spinal effect in United States every day.

"I love Vivian. I love everything about her, but there's just so many challenges," Jacqueline said.

Perez said her second pregnancy with Vivian was a surprise, but that everything seemed normal up until delivery. Perez had regular checkups with the doctors and ate healthy throughout the pregnancy.

"Even in our case where we took the precautions, we did the healthy pregnancy, watched what I ate, it was still something that caught us off guard. Wish that I had a little bit more knowledge then," said Jacqueline Perez.

"Recommendations for folic acid implementation is to take at least a month before you get pregnant and at least for the first three months of pregnancy," said UT Medicine San Antonio Maternal-Fetal Specialist Dr. Patrick Ramsey.

It's why the Perez family said they support the FDA'S decision to add folic acid to corn masa flour. They told KSAT12 News that it's very exciting because every little bit counts.

"It'll be awesome to have a backup plan for something you are not planning," said Jacqueline.

Doctors told the Perez family that no two cases of spina bifida are alike so Vivian's future is unclear. However,  her parents are confident she'll continue to surprise them with her progress.

"We have high hopes. She's very smart, very strong-willed," said Frank Perez.

"We don't know where she is going to go, but we know we're going to do everything to get her there. She's going to do everything because she's just a little firecracker, " said Jacqueline Perez.

The Perez family said that meeting others through organizations like Spina Bifida Texas was a huge help for their family. It helped them learn more about Vivian's condition and about her potential.

Spina Bifida Texas is also participating in the "Big Give SA". For more information, click here.

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