My name is Jacob and I’m 8 years old. Two years ago, I had a stroke. At first, I didn’t realize what that meant, and I didn’t understand why I couldn’t move the way I used to.
With time, I’ve been able to get most of my function back, but my right arm has something called dystonia. That means the muscles cramp up and sometimes my arm moves on its own or gets stiff. I can’t control it, and that makes life hard sometimes. …
Seven-year-old Jacob Downing has a list of caregivers as long as his “different” right arm.
On top on the list is a be-spectacled, bow-tie-wearing neurologist. Dr. Michael Rivkin is co-director of the Boston Children’s Hospital Stroke and Cerebrovascular Center and the first person Jacob remembers seeing after the emergency surgery he underwent following a stroke.
Jacob doesn’t remember the surgery to clear the blood clot that caused his stroke. “Dr. [Darren] Orbach worked a miracle for him,” says Jacob’s mother Nichole. Orbach is the neurointerventionalist who performed the endovascular thrombectomy procedure to break up the blood clot that caused his stroke.
“Like a lot of doctors at Boston Children’s, Dr. Rivkin talks directly to Jacob. Jacob knows he is trying to help him, and it shows,” says his father Justin.
And Jacob has needed a lot of help in the aftermath of his stroke. Initially, he seemed to quickly regain some of his lost skills. …
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.”