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.”
On a snowy Saturday in January, two mothers sat sipping tea and conversing about their sons. It was an ordinary scene, but the women’s conversation was far from ordinary.
The scariest thing a doctor can tell you is ‘I don’t know. I’ve never seen this before.’ To find two doctors who treated this before and then to see Dan doing so well is tremendously gratifying. ~ Susanne Malloy
Susanne’s son Alexander Malloy, 14, had been recently diagnosed with Gorham-Stout disease. Gorham-Stout, also referred to as “vanishing-bone” disease, triggers a process that destroys bones and typically affects a single area like the shoulder, jaw hip, rib or spine.
“It was shocking,” recalls Susanne. An MRI earlier that week, prompted by a worsening of her son’s mild scoliosis, had shown Alex was missing bones in his spine and likely had Gorham-Stout.
After the MRI, Alex’s orthopedic surgeon, Dr. Lawrence Karlin, reassured Susanne and her husband Tom that Boston Children’s Hospital would have a plan for their son.
As Susanne and Tom digested the diagnosis, she began thinking Gorham-Stout, a rare bone disease of the lymphatic system reported in about 300 patients, sounded familiar. “I can’t have heard of it before,” she told herself.
The feeling persisted, so she called a friend, who said, “That sounds like Dan Ventresca.”
Twelve years earlier, Dan, who lived a few streets away from the Malloys in Hingham, Massachusetts, had been diagnosed with the same disease. Like Alex, Dan’s disease was located in his spine. Susanne’s friend called Dan’s mother. …
In July 2013, our family of four crowded into a tiny room at the Women’s Health Clinic in Casper, Wyoming. We were so excited to find out if our third child would be a boy or a girl, and our daughters Adleigh and Oliviah had their own hopes. We had waited for this day for so long, and for our daughters, it seemed like an eternity.
The day had finally come, and we all celebrated the fact that we would welcome a baby boy.
Our excitement lasted just a few minutes, though, as our obstetrician noticed a “bump” underneath our baby boy’s right arm. We were quickly sent to Rocky Mountain Hospital for Children in Denver, Colorado. Doctors there were mesmerized by this “bump,” and kept a very close eye on it for the rest of the pregnancy.
Our miracle — Kollins Holbrook — arrived on October 16, 2013. Our team of over a dozen doctors had prepared us for the possibility that our baby might not survive and were ready to revive him at birth, but Kollins surprised everyone. He was thriving.
Just hours into the world, Kollins had his first of a lifetime of MRIs. His bump soon had an official name — cystic hygroma. Although very close to his heart and lungs, it didn’t pose an immediate threat to him internally.
We went home a few days later and were hopeful about getting a plan in place to remove Kollins’ bump and move on.
We soon found out Kollins’ condition was a much more complex situation than we had ever imagined. As he grew, so did the hygroma. We also were aware this meant the bigger it got, the closer it came to his internal organs. …