Candice McCool and husband James knew that her pregnancy with daughter Logan was considered high risk, but they weren’t expecting an ultrasound at week 17 to reveal a problem, much less a serious diagnosis. During the anatomy scan, her doctor noticed that Logan’s head was a little abnormally shaped. Further tests revealed it was spina bifida. “Not only was she diagnosed with spina bifida, but she had the most severe form, myelomeningocele, which meant her back was completely open and nerves were exposed,” Candice said.
Candice was referred to the University of Alabama at Birmingham (UAB) Division of Maternal-Fetal Medicine, where she also met with doctors at Children’s of Alabama. “Children’s is great about having a plan before birth and the hospital’s Spina Bifida Clinic is amazing,” Candice said. “They helped us feel more prepared for Logan’s birth.”
In addition to having spina bifida, Logan was born with hydrocephalus, scoliosis, Chiari malformation type 2 and bilateral clubfoot. The day after her birth, Logan was transferred to Children’s to start treatment. She underwent surgery to close the opening, which was so large that it required a plastic surgeon. “She ended up being in the hospital for about 35 days for her post-surgical care and then they let us go from the NICU to a step down unit for the last five days until her incision site healed enough for us to care for her at home,” Candice said.
In the step down unit, the McCools were taught how to catheterize Logan and stretch her legs. “We were also taught the signs and symptoms of hydrocephalus, that if not resolved with her ETV-CPC surgery, would require us to return to the hospital for a VP shunt, which she ultimately wound up needing,” Candice said. “The nurses were great in letting us step in and help and making sure we got all the info we needed.”
Once home, Logan has thrived. Though Logan is a full-time wheelchair user, she stands up at a table wearing hip, knee, ankle, and foot orthotics (HKAFOs). She is working with a physical therapist to try walking in the HKAFOs. “She is actually performing better than doctors originally thought she would as far as function in her lower extremities,” Candice said. “So far she has no cognitive deficits, so we’ve even let her go ahead and start preschool.”
Logan continues to visit Children’s Spina Bifida Clinic twice a year. During her appointments, doctors monitor her progress and catch any potential problems. “I very much appreciate how the doctors at Children’s stay on top of everything,” Candice said. “Every time we go, they are checking everything so that if something is wrong, it’s caught quickly. The Spina Bifida Clinic also makes it easy on us in that we can see all of her doctors in one day rather than having to make multiple visits. It means a lot that they care enough to not only take such good care of her, but to also make the process as easy on us as possible.”