Spina Bifida Does Not Define These Young Ladies
Grace Phillips
Ashland Beacon
October is Spina Bifida Awareness Month. I know we have all heard the name, but what do you really know about Spina Bifida? Spina Bifida is the most common permanently disabling birth defect that is associated with life. According to the Spina Bifida Association website, there are approximately 166,000 individuals in the United States with the disability.
The neural tube is what eventually becomes a baby’s brain and spine. Typically, about four weeks into a pregnancy this tube closes. However, in Spina Bifida, it does not develop or close properly and causes defects in the spinal cord and bones of the spine. It is not really known why this happens, but a lack of folic acid in early pregnancy creates a huge risk factor.
Expectant parents look forward to the day they can finally have their ultrasound and learn the gender of their baby. Most of these appointments go without incident, and parents leave smiling with photos in hand; however, other parents’ dreams are crushed.
Kecia and Aaron Hanshaw were so excited as they planned for their “bundle of joy.” The day had finally arrived, and they were off to the doctor for an ultrasound to tell them if they were having a boy or girl. According to Kecia, “What we thought was going to be one of the happiest moments of our pregnancy…finding out the gender of our baby…turned out to be very traumatic.” She continued, “I could just tell as the lady doing the ultrasound was talking that something was wrong. She wasn’t saying a whole lot about how the baby looked or showing any type of excitement, so I just knew.” The technician told Kecia to wait on the table while she went to get the doctor. According to Kecia, “My mother’s instinct kicked in, and I told Aaron something was wrong.”
The doctor told the Hanshaws he could not see the bottom half of the baby’s spine and that she had a lemon-shaped head. Kecia was immediately referred to Lexington for additional testing and was then sent to Cincinnati. Over the next 13 weeks, there were multiple trips to the hospital there for MRIs and testing. At week 33, the doctors at Cincinnati wanted her to stay, so they could monitor her more closely. “We were lucky to get a room at the Ronald McDonald House where we stayed until we were able to return home.”
Many times, during the pregnancy, the Hanshaws were told Allie would probably be a vegetable IF she did live because her case was so severe. She has the worst form of Spina Bifida, Myelomeningocele. Her lesion is very large and due to the severity, Kecia was not a candidate for fetal surgery. Kecia said, “We were prepared for the worst but prayed for the best.” Immediately after Allie was born, she was transferred to Cincinnati Children’s to repair her spine. She had hydrocephalus-fluid on the brain, and a shunt was placed a few weeks later to help with this condition.
Allie is paralyzed from the breastbone down. She also has Chiari malformation, vesicoureteral reflux and her bowels are paralyzed. She has had multiple surgeries, mainly on her kidneys. “We have to catheterize every four hours and do a bowel program every other day.” Kecia continued, “We have faced many challenges with Allie’s health…mostly kidney stones and UTIs. We also struggle to find places that are accessible for Allie and her chair, but the good definitely outweighs the bad.”
Shelby and Brad Petitt were full of excitement expecting their first child. They went for an ultrasound at 25 weeks when they were given devastating news. Shelby commented, “It was just a shock to us. We did not have a history of this type of thing in our families. We were scared and didn’t know what the future held for her.”
Paislee was born with a mild form of spina bifida with a “closed spine,” which meant she did not have an opening in her back. However, children with this form of spina bifida can have a tethered cord that needs to be released. Paislee needed surgery at three months to release this. Shelby shared, “I had a doctor tell me she would never walk, but she sure proved them wrong!” Today Paislee walks with the aid of braces and crutches.
The challenges have also been great for the Pettit family. Paislee has needed multiple surgeries. She has had to learn to walk a different way than most. Both girls are faced with many of the same challenges as they grow older. Shelby shared, “Paislee has the best personality and doesn’t let anything get her down. When she started school for the first time, I worried what kids would say to her or make fun of her, but that has never been the case. I thank God every day for keeping His hand on her! She is a miracle!”
Once a mother has a child with Spina Bifida, the chances of having a second with the disability increase. Shelby and Brad added a little boy, Bronson, to their family a few years later. “We were very concerned about a second child. We had to have an extensive ultrasound with a high-risk doctor to rule out this happening again.” On the other hand, Kecia and Aaron decided due to the severity of Allie’s spina bifida, they would not risk another pregnancy.
As Allie ages, there will be many additional challenges for her. As her body and spine grow, her spinal cord will not grow as it should with the rest of her body. It will eventually become tethered and will need to be repaired. It will also pull the bottom half of her brain downward into her spine. Paislee works hard each week at therapy with the hope that maybe someday she will be able to walk without crutches.
These amazing young ladies have been through so much in their young lives already and will continue to face challenges. However, they have the most amazing smiles and determination. Paislee cheers with the Boyd County JFL. Allie may be confined to a wheelchair but don’t get in her way…she is one determined little lady! With the help of their parents, these disabilities will not define their lives. Watch out world…here come Paislee Pettit and Allie Hanshaw!
