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.”
Emergency transport and life-saving care
At 3 a.m., the family arrived at Boston Children’s Hospital and met with interventional radiologists who were prepared to do whatever it took to keep Madelyn alive. A few hours later, Dr. Darren Orbach, co-director of the Cerebrovascular Surgery and Interventions Center, arrived and sat down with Matt and Julie.
He explained Madelyn had a dural sinus malformation (DSM). This meant the blood flowing through her arteries and directly into her venous sinuses was too fast and high-pressured, causing her sinuses to enlarge and put pressure on the brain.
In addition to her DSM, Madelyn also had a clot in her sinus, called sinus thrombosis, which on its own can also cause serious brain injury. Orbach explained that the best treatment approach for Madelyn’s complex problem was twofold. First, she needed an embolization, a catheter-based procedure that creates an artificial blockage in a blood vessel. Second, she needed blood-thinning medication to combat the clot.
He also said Madelyn needed the procedure that very afternoon.
“We asked, ‘Can we get a second opinion first?’,” says Julie, “and he said, simply, ‘No.’ There was no time, and it turns out he’s only one of a handful of doctors who specialize in this condition.”
Not 12 hours later, Madelyn became one of the youngest people to ever undergo the procedure. Using a specialized catheter, Orbach went into the offending branches of Madelyn’s arteries with a microcatheter and closed them one by one using a medical glue designed for embolization in adults. Afterward, Madelyn was put on IV heparin to help her body absorb the clot.
The treatment was a success.
The family stayed in the intensive care unit (ICU) for a few days and then went home. A week later; however, they rushed back when Madelyn’s blood clot grew, and her body weakened once again. Her medical team was able to shrink the clot significantly with high doses of heparin and plenty of IV fluid.
After early setback, a full recovery
Madelyn’s brain grew around the clot, and she has had no discernable cognitive impairment.
From start to finish, “we were in and out of the hospital for about six weeks,” recalls Julie. “We owe so much to the doctors and nurses at the Cerebrovascular Surgery and Interventions Center. Especially Dr. Orbach, her hematologist Dr. Cameron Trennor and Dr. Michael Rivkin, the director of the Neurology ICU.”
“If I could give advice to another parent dealing with this diagnosis,” Julie adds, “I wouldn’t say, ‘Don’t worry,’ because of course you will worry. It’s hard to know, looking back, if any words would have been comforting. But now, from this side of it, I’d say trust in the doctors, love your kid through it, and trust that you are in the best place and everything will turn out OK.”
A bright future for Madelyn
Orbach says the likelihood Madelyn will develop a recurrent problem is very, very low, and in time, there will be no need for continuous follow-up imaging.
This fall, Madelyn started kindergarten, and so far says she loves school. She also loves dancing, drawing, making crafts and being a big sister to Kaitlin, who is 2. Getting the family together for breakfast every morning is one of her favorite rituals.
“She’s just the sweetest girl. We are so grateful and give back as much as we can,” says Julie. “This year, Madelyn wanted to do her part, too, and she held a lemonade stand to raise money for other kids in the hospital. All her preschool friends came! It was really special.”
Learn more about the Boston Children’s Cerebrovascular Surgery and Interventions Center.