Will and Alicia Ethridge knew their unborn son would need complex open-heart surgery soon after birth, due to a serious congenital defect that was detected in utero.
Wesley suffered from a genetic form of cardiomyopathy, which meant the walls of his heart muscles were thickened, and blood flow to the left side of his body was restricted.
The knowledge about their son’s disease prepared them for many things about the impending medical journey (including arranging for cardiac surgery at the Boston Children’s Hospital Heart Center, just a few hours’ drive from their home in Maine) but there were many more things about the months to come that they did not expect.
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.”
Roughly 1.4 million Americans suffer from inflammatory bowel disease (IBD), which refers to conditions that cause inflammation of the intestinal tract. Children with IBD may suffer from abdominal pain, cramping, blood in the stools and diarrhea. Early signs may include fever, fatigue and weight loss.
IBD presents in two main forms: ulcerative colitis and Crohn’s disease. While both are lifelong conditions, they can often be treated effectively with regular medication and diet management, surgical care and psychological support.
The IBD Experience Journal, created by the Boston Children’s Hospital Inflammatory Bowel Disease Center and the Department of Psychiatry, includes stories and experiences from children, young adults and parents to represent the collective wisdom of families living with IBD. Here are some of their stories, in their own words. …
It was just after midnight on an unseasonably warm Christmas Eve when Morre and Marcus stepped off the plane at Logan Airport. They carried precious cargo: their newborn daughter Madison needed emergency heart surgery at Boston Children’s Hospital.
Madison was the couple’s first child. Like most expectant parents, Morre and Marcus were overwhelmed with joyous anticipation as the pregnancy progressed. They decorated their baby’s nursery and picked out a name: Madison, which means “gift from God.”
But at Morre’s 20-week ultrasound, the couple’s joy was tempered by some troubling news.
Madison had complex congenital heart disease. The prognosis was not good.
Doctors near the family’s home in North Carolina first thought Madison had a disease called hypoplastic left heart syndrome, or HLHS, which means the left side of the heart is so underdeveloped that it can’t pump enough oxygenated blood throughout the body. After a follow-up appointment with a local pediatric cardiologist; however, Morre and Marcus learned there was more to the story. …