Reagan’s Story: Procedure Provides Hope for Baby’s Seizure-Free Future
Reagan’s Story: Procedure Provides Hope for Baby’s Seizure-Free Future
Since she was just 4 days old, the now 15-month-old Reagan Cross, had multiple seizures every day, at times having more than 200 seizures in a single day. Her parents, Kayla Maberry and Todd Cross, resigned to the fact that it may always be this way, until hope came in the form of a rare brain surgery offered at CHRISTUS Children’s in San Antonio.
“When she’d have a seizure, her whole body would draw up, cradled in the fetal position. Her arms and legs would come in with infantile spasms. It was awful. She’d cry every time she had them. It was really hard. At 2 weeks old, my doctors told me she would never walk or talk,” said Kayla.
Reagan was born June 22, 2021, at a hospital in West Virginia. Her mother, Kayla, had a normal pregnancy, with no complications or warning signs that baby Reagan was having problems.
“Reagan’s head measured big during pregnancy, but I never thought anything was wrong,” said Kayla.
That is, until her parents brought Reagan home and realized something was not quite right. At her one-week appointment, the pediatrician referred her to the local hospital, who recommended she visit with a specialist. The family was already in the transition of relocating to the San Antonio area, and that is where she met Dr. Melissa Svoboda, MD, chief of pediatric neurology at CHRISTUS Children's.
Dr. Svoboda conducted an EEG and diagnosed Reagan with infantile spasms. She then performed a brain MRI and found the cause of the seizures - polymicrogyria and hemimegalencephaly (HME), a rare malformation involving one side of the brain. In this case, it was the right side of the brain.
“We were told it basically means that wherever there are supposed to be folds in the brain, it’s flat; and where it’s flat, there are folds,” said Kayla. “With the seizures, she couldn’t learn anything new. It was robbing her because there was no way she can progress.”
On September 1, 2021, Reagan was brought in to stay at the hospital for two weeks as the medical staff tried various medications to control her seizures.
“They told us she would never walk or talk. That was hard to hear. Whenever they told us that, my mom and grandma flew right out. My partner, Todd, hid it better than I did. I think I just spiraled out, downhill depression after that. It was hard on my girls (ages 10 and 5). They didn’t understand,” said Kayla.
Unfortunately, the medications only worked for about six months before the seizures returned with a vengeance in January 2022. When the medicine stopped working completely, Dr. Svoboda referred Reagan to Dr. Mark Lee, MD, chief of pediatric neurosurgery at CHRISTUS Children's. He explained a drastic and rare brain surgery option to stop the seizures completely.
“Dr. Lee changed our life. I couldn’t thank him enough. I think he’s a great doctor. He was realistic, gave us the chances of it not working. He did his job and kept us informed,” said Kayla. “He suggested a surgery in which he would be turning off the right side of Reagan’s brain. He was going to make a cut on the side of her head up to the side of her head and down, almost like a boomerang.”
This surgery is called a hemispherotomy, in which Dr. Lee disconnected the right half of the brain from the rest of the brain including the entire left hemisphere and the midline structures such as the basal ganglia and thalamus. On September 3, 2022, one year after her diagnosis, Reagan had her life-saving procedure.
“They took her back at about 9 a.m., and surgery was about five hours. It was constant anxiety. I was nervous, with so many thoughts going through my head at that time with everything that could go wrong. It was the longest five hours ever,” said Kayla.
Relief filled Kayla and her family after Dr. Lee walked out and gave them the news that the surgery was a success. However, nothing could prepare Kayla and Todd for the shocking sight of seeing their baby girl post-surgery in the recovery room.
“I think seeing your kid like that … you just can’t forget that picture. Her head was wrapped up and had her sedated with morphine for the pain. The real shock wasn’t until they took the bandage off, and I saw the scar. It didn’t look like my baby. There were tubes everywhere,” said Kayla. “She started waking up about four days after surgery and was very fussy and uncomfortable, but that was the first time, since she was 4 days old, that she went a day without seizures.”
Kayla says she knew it was all worth it after she experienced something special happen; she saw baby Reagan do something she had never done before.
“As she was laying in the bed, for the first time ever, she grabbed a handful of my hair. She was actually feeling it. Before, she would touch your hair, but she didn’t acknowledge what it was. This was my first sign that something had changed,” said Kayla.
That’s not all that changed. With this surgery, Reagan is expected to eventually be able to learn to walk and even speak, which Kayla never dared to hope for before.
“Dr. Lee said she should be able to walk and even run with a limp. Sometimes she may keep an arm drawn up, but that’s a major change from when being told she would never walk or talk,” said Kayla “Her right side of the brain doesn’t work now; it’s just off, so she lost peripheral vision on that side. We were also told that she has issues on the other side of her brain as well, so we were unsure if she’d still continue to have seizures. Thankfully that wasn’t the case.”
The surgery follow-up appointments have shown signs of progress, and she will be coming to Dr. Lee for check-ups every three months, and eventually, just once a year. She also sees an endocrinologist and is continuing to do therapy twice a week.
“It’s like she’s there. Before, you’d look at her and not see a personality. She was still a happy baby, but she wasn’t picking up sensory stuff. When she’s doing her sensory therapy now, you can tell she’s thinking and she’s there with it,” said Kayla. “We have a lot more faith now in her that things are going to be OK. We’re very hopeful.”
Reagan is now able to explore and discover favorite toys.
“She loves to play with her special chair that she uses to help with her neck control. She’s now learning to sit up and is engaging with books and toys, something she’d never taken an interest in before,” said Kayla.
Kayla says it’s all due to the amazing medical staff at CHRISTUS Children's.
“I don’t have family here, so they were our hospital family. We saw Dr. Lee and his nurse, and they were incredible. Even the nutrition and speech therapists in the hospital were great. It’s like they always knew what to say,” said Kayla. “We always said if we can stop the seizures, it was worth it. Dr. Lee gave us Reagan back. He gave us Reagan, really. The risk was definitely worth it.”
To learn more about pediatric neurosurgery at CHRISTUS Children's, please visit: https://www.christushealth.org/get-care/services-specialties/neurology/pediatric-neurosurgery