Saving six: Life before and after transplant

An organ transplant is a life-changing event extending far beyond the operating room, the clinics and the hospital walls. Read about five children, one young adult and their families, whose lives were forever changed by the Pediatric Transplant Center at Boston Children’s Hospital.


Lydia’s liver transplant, a mom’s gift

Living donor liver transplant recipientDawn Cavanagh gave her daughter life twice — first when she was born and, again, when she gave 13-year-old Lydia a piece of her liver last summer. The donor-approval process, which occurs with Boston Children’s partner Lahey Hospital & Medical Center, required hours of medical screening, including an interview with a social worker, who asked if Dawn expected anything in return for being Lydia’s liver donor. “And I said, ‘Of course I expect something,’” explains Dawn. “’I expect her to live a long and happy life, and I expect her to be with me for a long time.’”

More than a year after her liver transplant, for Lydia’s birthday, Aug. 1, the Cavanagh family went on Lydia’s Make-A-Wish trip, a Disney cruise to the Bahamas. “We had so much fun,” says Dawn. “She’s a happy kid. She has dreams. She wants to be a transplant nurse, and she wants to work on 10 South at Boston Children’s Hospital.” 

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Annelizabeth’s story: Care that feels like home, close to home

sickle cell WalthamWhen you’re 5, it’s nice to have a place that feels like a second home. Where there are lots of hugs. And songs. And games. And you can curl up and watch “Frozen,” your favorite movie.

For Annelizabeth Jean-Baptiste, a spunky Waltham kindergartener, that place is Boston Children’s Hospital at Waltham.

Annelizabeth, or Annie (but never Anna, she says), first came to Boston Children’s at Waltham two weeks after she was born.

Her mother Elcie wasn’t expecting that her fourth child would need special care. “It was a difficult pregnancy. I was very excited and relieved when she was born.” But that sense of relief turned to surprise shortly after Annelizabeth’s birth.

She tells me, ‘Mommy, I’m a big girl. I’ll go by myself,’ when it’s time for her blood draw.

Elcie had undergone prenatal screening for sickle cell disease, and her baby had tested negative.

After Annelizabeth was born, her first test for the disease was positive. Her second test also came back positive, and Annelizabeth’s pediatrician referred the newborn to Dr. Rachael Grace, a hematologist at Boston Children’s.

“Dr. Grace explained what sickle cell disease meant. I hadn’t known before,” says Elcie. Grace sees patients twice weekly at Boston Children’s at Waltham, allowing the Jean-Baptistes to stay close to home for Annelizabeth’s ongoing sickle cell care.

Charleen Colleran-Lombardi, a social worker at Boston Children’s at Waltham, is an important part of Annelizabeth’s care team, too. She’s been by Elcie’s side since Annelizabeth’s diagnosis was confirmed, helping Elcie and her husband Maguerre manage their daughter’s care.

“We started learning everything we could about sickle cell disease. It’s so hard when they are little babies and can’t tell you they are in pain,” says Elcie.

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First-of-its-kind knee surgery gets Ashley in the swing

meniscus transplantSixteen-year-old Ashley Meyer never planned to golf. At age 5, she had a different plan. She wanted to cheer — and to be the best cheerleader.

Ashley never planned to be a Red Sox fan either. But during baseball season, the Philadelphia native shuns Phillies wear, donning Red Sox garb instead. And when basketball season rolls around, she’s often sporting Celtics’ green rather than 76ers’ blue.

We knew right away. Ashley turned to me and said, ‘Mom, he’s the one who will fix me.’

“We call her the Philly traitor,” jokes Ashley’s mom Loreen, a nurse at St. Christopher’s Hospital for Children in Philadelphia.

Nicknames aside, Loreen and her husband Robert are fine with their daughter’s affinity for Boston.

After all, it’s the city where Ashley regained her mobility.

Ashley’s health challenges started when she was 5. Her knee would click and lock.

Although Ashley always seemed to be smiling, the pain often kept her from running or playing, says Loreen.

Loreen took Ashley to her pediatrician and then a pediatric orthopedic surgeon. An MRI showed a discoid meniscus. The condition, characterized by an abnormally shaped meniscus, can cause knee pain or knee popping. Typically, children with these symptoms can be treated via arthroscopic surgery.

Ashley had her first surgery to reshape and repair her meniscus at Children’s Hospital of Philadelphia.

“She did OK and stuck with her physical therapy, but she plateaued to a point that left her with ongoing pain and difficulty walking,” says Loreen.

Over the next two years, Ashley had two more knee surgeries at St. Christopher’s Hospital for Children to repair her meniscus.

Each time, the result was the same. She’d get better, but the pain would persist, and walking grew increasingly challenging. She needed crutches, a walker and then a wheelchair.

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‘Don’t let dyslexia hold you back’

14-year-old Josh has dyslexia

In kindergarten, while other students were beginning to read books, Josh Thibeau was still learning the alphabet. “I thought, I can’t read so why even try. I thought it was a waste of time.”

Five to 17 percent of all children in the U.S. have developmental dyslexia. Josh is one of them.

Children with dyslexia — often caused by some difference in normal brain development and damage to the brain — have trouble with comprehension because they can’t read text accurately or fluently.

Josh, now 14, has four other siblings, three of whom also have dyslexia. “We are very fortunate because if Josh had been a first child, we would not have noticed any of the signs,” says Josh’s mom Janet Thibeau.

During his early years in school, Josh found it difficult to keep up with his classmates. He was not able to associate letters to the sound they made. “I really hated it because I couldn’t show what kind of person I could be,” says Josh. “Other students were reading books I really wanted to read, but I couldn’t because I still had no idea what sound the alphabet made.”

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