When Michael “Mick” Devlin was born in 1987, his parents were sure of two things: They loved him, and they would cherish every minute they had together because no one knew how many they had left.
Mick was born with ornithine transcarbamylase (OTC) deficiency, a genetic disorder that disrupts the liver’s ability to break down protein and eventually leads to a toxic build up of ammonia in the blood. It’s a very serious condition, and when Mick was born there weren’t many sustainable treatment options for OTC deficiency. Many children with the disease died.
Needless to say, when Mick’s parents Cathy and Michael held their newborn son and learned about his OTC deficiency, they were terrified. And while they didn’t know it at the time, their son would soon be one of the first children in New England to receive a successful liver transplant—a surgery that would eventually save his life, and the lives of thousands of children to follow. Full story »
Rachael Adler is not the kind of person who stands around waiting for life to happen. At 13, she’s a good student who participates in many school and community service events. And despite her young age, she’s been a key speaker at events held by both The New York Alliance for Donation (NYAD) and the Northeast Kidney Foundation.
But Rachael didn’t get to be the strong, active young person she is today without overcoming adversity first—and overcoming that adversity is playing a big role in helping shape the person she wants to become. Full story »
By Irene Sege
Kate Franklin was just three and a half years old in August 2000 when her mother Emily brought her to the Boston Children’s Hospital emergency room, because she was bruising easily and couldn’t seem to shake a strep throat. Loren Walensky, MD, PhD, had just started his fellowship in pediatric hematology/oncology the month before, and that night Kate Franklin became one of the first patients he diagnosed with cancer. When Walensky told Emily Franklin that her daughter had leukemia, the mother placed her hands on the doctor’s shoulders, and, in a moment that Walensky says he will never forget, she said, “I will see you at her wedding.” Full story »
By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis.
Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.
But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.) Full story »
The Longwood medical area (the section of Boston that’s home to Boston Children’s Hospital and many other renowned medical centers) was recently the site of an exciting speaker series called “TEDxLongwood”—an independently organized event that brought people in the Longwood area together to share a TED-like experience.
Two of the day’s presenters had personal ties to Boston Children’s, each with a unique and moving story, which we wanted to share with Thriving readers.
Elaine C. Meyer, PhD, RN, is a staff psychologist at Boston Children’s and director of the hospital’s Institute for Professionalism & Ethical Practice. In the following talk, Meyer recalls personal experiences—both from her times as a doctor and a patient—to remind listeners that sometimes being supportive and emotionally available to a patient and her family is the most important care a person can provide.
Jimmy Zankel is a director of The Big Apple Circus, the circus troupe that trains the men and women who staff Boston Children’s Clown Care Unit. In the following talk, Zankel explains how specialized training, carefully coordinated communication with the medical team and a pair of oversized underwear played a crucial role in one child’s treatment.
Bringing your newborn baby home from the hospital is a happy and momentous occasion. Tiny booties, frequent feedings and diaper changes, sleep adjustments and more are highlighted with warm snuggles, gentle kisses and family bonding time.
But for the Sundquist-Koch family, the happiness associated with those first few days as a new family took a sharp and unexpected turn soon after their son August Koch arrived home from the hospital.
At the tender age of 2 weeks old, August spiked a fever and needed to be seen at Beverly Hospital’s pediatric emergency department. Fortunately for August (and his very nervous parents Kate and Simon), Boston Children’s pediatric-trained physicians were on staff to make sure he received the care he needed. Full story »
When Dominic Gundrum first came to Boston Children’s Hospital late in 2012, his future was very much unknown.
He was born with a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead, known to the medical community as a Tessier midline facial cleft. His cleft was so large that fluid and tissue from his brain, normally encased in the skull, had seeped outwards, forming a golf ball-sized bubble underneath the skin of his forehead. It’s a condition called an encephalocele, and Dominic’s was so severe doctors weren’t sure how much they would be able to help him. Full story »
By Rebekah McGowan
When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.
“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”
And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.
Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year. Full story »