It began like any typical late summer day. Lilith Borden and her mom, Victoria, had stopped by a farm near their Concord, New Hampshire, home where the 3-year-old could enjoy an ice cream cone — and burn off some energy playing in a nearby field.
“We were running through the grass, when Lilith suddenly grabbed the back of her neck and screamed that she had a boo-boo,” Victoria remembers. Within seconds, she seemed to have trouble moving. As Victoria called for help, the little girl collapsed to the ground. …
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.”
“I heard a noise and went in and saw him in a full-blown tonic-clonic seizure,” says his mother, Amy. Paramedics brought him to the hospital. Any further seizures could mean trouble, they told the Stedmans. “They said, basically, ‘you’re allowed one seizure in your life,’” Amy recalls.
A few months later, on an August evening around 10 p.m., Adam spoke with his girlfriend on the phone. She later told Amy, “Go check on him—he sounds kind of out of it.” That turned out to be a second seizure.
The third seizure, the worst yet, happened on Nov. 11. Adam had the day off from school, and his girlfriend was visiting. The family was eating dinner when the seizure started. It lasted nearly five minutes, and Adam was turning blue. Another seizure followed within weeks. The local hospital in Connecticut did an MRI, and the Stedmans received a call: “Can you come in before the office opens?”
Adam had an arteriovenous malformation, or AVM, a tangle of abnormally connected arteries and veins. Through a recommendation, the Stedmans met five days later with Dr. Edward Smith, a neurosurgeon in Boston Children’s Hospital’s Cerebrovascular Surgery and Interventions Center.
Because the AVM was in the visual processing area of his brain, Adam faced a risk of serious vision loss if the AVM wasn’t removed soon. It could bleed or burst at any time.