Six-year-old Madelyn knows why she has to see a special team of doctors twice a year: she had brain surgery as a baby. But she doesn’t yet understand the full weight of the story.
“She knows there was a problem with something in her brain, and she had to go to Boston for special care, where the doctors made it all better,” says her mother, Julie. “She knows the team still checks in on her to make sure she stays healthy.”
As she gets older, Madelyn will be able to comprehend more and more. Someday she’ll realize not only just how lucky she is to be alive, but the incredible ordeal her parents went through when she was just 5 months old.
A mysterious illness
It was Valentine’s Day, 2011. Six-month-old Madelyn was sick — VERY sick. Her worried parents, Julie and Matt, took her to her pediatrician, who thought she was suffering a virus because she did not have a fever.
“We took her home, but this virus wasn’t going away,” says Julie. “Eventually it got so bad we had to take her to the Southcoast Hospital emergency room (ER). She wouldn’t stop vomiting and couldn’t keep anything down, not even medicine.”
In the ER, Madelyn was so limp “she felt like a rag doll in my arms,” Julie says. That tipped off the doctor on call, Dr. Sara McSweeney-Ryan, to order an MRI.
“Dr. McSweeney-Ryan is the first doctor I credit with saving Madelyn’s life,” says Julie.
On MRI, it was clear that there was a problem in Madelyn’s brain, and her life was in danger. McSweeney-Ryan knew exactly where Madelyn needed to be.
“We thought, it’s already 1 a.m., maybe we can stay the night,” says Julie. “But they ordered an ambulance to take us to Boston as quickly as possible. There was no time to lose.”
Maddie, our third child of four and our smallest, always seemed to be fighting off some type of illness. When she hit puberty, her health struggles seemed to get worse. I kept telling my husband and Maddie’s primary care physician something was not right, but I couldn’t quite put my finger on it.
Maddie knew, too. She had hand tremors, her grades started to slip, and my otherwise well-liked, social daughter was becoming very withdrawn. A sleepover with a friend was not even worth it for her — it would sap her energy and set her back a few days in school. She spent most of her time at home, lying in bed, trying to cope with her headaches and fatigue. There were mornings before school that she’d make it to the top of the stairs with her backpack on and then just lie down on the floor. She would leave for school dragging, and I would just sob.