The first 12 years of Maryn’s life were those of a typical kid. When she wasn’t competitively swimming or playing volleyball, she was in school, with family and friends, and enjoying life.
But in early 2023, Maryn began to experience headaches that progressively increased in frequency and intensity. Over the next two years, they would become so severe and debilitating that she eventually spent most days in bed.
The road to a diagnosis
“I was missing a lot of school, missing out on a lot of my sports, and I just didn’t have a good quality of life. I was doing nothing, just lying in my bed all day and nothing would help,” Maryn explained.
In June of 2024, Maryn and her mom, Emily, knew something wasn’t right and asked questions at Maryn’s annual physical, resulting in preliminary blood work and a CT scan with her primary care physician. Those results led to an MRI and a diagnosis of Chari I malformation, a condition where the bottom part of the brain, the cerebellum, pushes through the opening of the skull base into the spinal canal placing pressure on the brain stem and upper spinal cord.
Referral to Children’s Minnesota
After her daughter’s diagnosis, Emily spoke with two of her mutual friends who have children who were patients of a Children’s Minnesota pediatric neurosurgeon, Dr. Meysam Kebriaei, and they spoke highly of his knowledge, skills, compassion and care.
“[Maryn’s] quality of life was terrible. I knew there had to be something else we could do,” Emily said. “I decided to call [Dr. Kebriaei’s] office and see what they would say about how the process would work.”
Children’s Minnesota staff got Maryn an appointment just a few days later thanks to a quick referral from her primary physician.
“It was a miracle. I couldn’t believe it,” Emily said. “The Children’s [Minnesota] staff was so caring and concerned and empathetic. I was like, ‘Oh my gosh, God is moving in mysterious ways because this is amazing.’”
At Maryn’s first appointment at Children’s Minnesota, Dr. Kebriaei and the neurosurgery team decided to try non-invasive treatment techniques first, such as physical therapy. A few months later, with no improvement from non-invasive treatment, Maryn had another MRI and the neurosurgery team began to discuss surgery.
“I immediately started crying because I was scared to have brain surgery.” Maryn said. “But I was like, ‘It’s been way too long. It’s time for me to get better.’”
Maryn’s surgery was scheduled at Children’s Minnesota for just three weeks later, on September 16, 2024. The goal of surgery was to decrease the crowding of the brain and cervical spine at the base of the skull. The surgery required a patch to be placed on the dura, the covering of the brain that was opened during surgery.
A short stay at home
On a walk through their neighborhood, Emily looked at the back of Maryn’s head and noticed her incision was leaking clear fluid.
“It looked like her incision was crying,” Emily said. “My heart dropped.”
After fewer than 48 hours at home, Maryn’s family headed back to Children’s Minnesota. They learned that there was an increased buildup of cerebrospinal fluid causing the dura patch to become weakened. Consequently, Maryn underwent a repeat surgery to repair the patch.
After undergoing surgery, Maryn spent six days in the pediatric intensive care unit (PICU) at Children’s Minnesota before being able to heal at home, but something didn’t seem right.
“I was so scared because when I went home, I wasn’t feeling the best. Every time I stood up my head pounded, and I was always dizzy. I was like, “Well, maybe this was all for nothing,’” Maryn said.
A long list of ‘thanks’
Maryn and her family are beyond thankful for the staff that supported them through both of Maryn’s surgeries and hospital stays.
“It’s really hard to watch your child go through something like that, especially twice, but Children’s [Minnesota] made the experience as best as it could be. All the PICU nurses were so amazing. We had many visits from physical therapy, occupational therapy, child life specialists, the therapy dog…everyone was kind and compassionate, and we received such good and responsive care,” Emily said.
Emily is grateful that Dr. Kebriaei was able to help Maryn get back to being a teenager. She recalls Maryn being in high spirits after her second surgery; something that Emily hadn’t seen in her daughter in years.
“It’s truly been a life changing experience for Maryn. I remember her saying one of the first days we were home after the second surgery, ‘I don’t know what to do with myself, I haven’t felt this good in such a long time. I don’t know how to feel without a headache,’” Emily said.
Life today
Now, Maryn is back to life as a typical teen. She has occasional follow-up neurosurgery appointments but will eventually transition to follow-up as needed. Maryn is back in school full time, swimming competitively again, and looking forward to playing volleyball in the spring.
“I’m so excited to be a normal teenager again and be able to have more freedom with my health and my life,” Maryn said. “I’m so happy to be able to live without pain,” Maryn said. “And now I’m going to have a really, really good college essay!”
