If picture is worth a thousand words, then how much is this picture worth?
For Debbie Paul, who received the above photo in a text from her son, it is priceless. “It was a turning point in my mind,” she says.
That turning point took place on July 7, nearly two weeks following her son Adam’s graduation as a service-dog handler. Adam, who is 14, going on 15, has spina bifida, a birth defect that involves the incomplete closure of the spinal cord. He was profiled in an October 2015, Boston Children’s Hospital Thriving blog. …
Listen to Colton and Lena talk about their relationship.
My little sister, Lena, was born in Denver, Colorado, on Feb. 24, 2000. My recollection of that day and the weeks that followed is hazy — not only because I was just six years old, but also because I was being shuttled between several relatives while my parents attended to some “medical problem” my sister had, which I couldn’t really understand.
The words spina bifida didn’t mean much to me, but between my parents’ solemnity and the fact that — as it was explained to me — the doctors needed to cut into my sister’s back with a laser, I started to get an abstract, naive idea of the seriousness of the whole thing.
“I had to grow up a lot faster,” says Adam. “I had to think — What is going to happen to me?What am I going to have to go through today?”
Spina bifida – a term meaning “split spine” – happens when the brain, spinal cord and/or meninges (protective covering around the brain and spinal cord) do not completely develop. It is the most common neural tube defect (NTD) in the U.S. …
Catch up on what you may have missed on Thriving last month. Our staff takes a look back at a few of this month’s favorite posts.
A mother’s intuition—and a fall down the stairs—save a little girl’s life
Liz Beaulieu is likely the only person in the world who can say she saved her child by falling down the stairs.
Her daughter, Arielle, was just 4 days old. Liz was carrying her downstairs when she slipped. Not sure whether Arielle had hit her head, she whisked her to her local ER.
“She seemed fine, and they said that she looked fine,” Liz says. Still concerned, though, Liz kept a close eye on Arielle over the next couple of days. That’s when she noticed something.
“I noticed the slightest flicker of her eyes,” Liz recalls, “and decided that I wanted to get it checked out.” She took Arielle back to the hospital, asking them to do a CT scan. The hospital demurred, but Liz insisted, telling them she needed the peace of mind.
“So they did the scan,” Liz recalls, “and they found an enormous tumor.”
Kyle Cooper was born with hemifacial microsomia (HFM), a craniofacial anomaly that resulted in the left side of his face being underdeveloped. It meant his face was noticeably uneven and barely any of his teeth touched. “I made it through and got used to it, but I couldn’t eat things like meat because it would take me three hours to chew.”
In February, Boston Children’s Hospital Oral Surgeon-in-Chief Dr. Bonnie Padwa reconstructed the 18-year-old’s upper and lower jaws and his chin. He returned to school just in time for prom and graduation.
Fifteen-year-old Esther Lovett’s life turned upside down after she suffered a concussion. An excellent student and star athlete, Esther was seriously challenged by the prolonged affects of her concussion.
For baby Joy, music and medicine are in perfect harmony
James Danna enters the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU) with the tools he’ll use to treat Joy, a 9-month-old patient recovering from open-heart surgery. Instead of a stethoscope or scalpel, James carries only small percussion instruments and a guitar.
He gently opens the door to Joy’s room, taking a quick read of her heart rate—138. Joy is a tiny little thing in a great big bed, under bright lights and tethered to multiple machines. Over the course of her multiple procedures for a congenital heart defect, the noise of the monitors, air conditioning and loudspeakers have made for a very wary baby. Her medical chart describes Joy as “staff phobic,” as most adults who enter her room poke and prick her.
But Joy has met James many times before and knows him to be safe. She locks her eyes on him and waits for the music to begin. Keeping his distance, James quietly hums a tune while strumming a few chords on his guitar.
Joy smiles, crosses her little legs and nods to the beat.
Tyler Bois is a boy with goals. His career aspirations run the gamut. Some days, he dreams of playing football with his favorite team—the Dallas Cowboys. Others, he wants to open a pizza shop, perhaps called “Slice of Ty” or “Ty’s Pizza Palace.”
For now, the nine-year-old stays busy with every day kid stuff—playing with his golden retriever puppy, planning for Cub Scout camp, dancing in the school talent show, skiing and wakeboarding. Somehow between all of these activities, Tyler has squeezed in 20 surgeries.
Born with spina bifida and a Chiari malformation (a congenital defect in which the back parts of the brain slip into his spinal cord), he approaches each surgery with a trademark smile and can-do attitude.