Stories about: multivisceral transplant

The tube, the team and the family that give life

Parenteral-Nutrition-Naema-BostonAs 2-year-old Naema Alshehhi turns the pages of her favorite book, her eyes glimmer with curiosity. Sitting with her father, Àbdulla and big sister, Dana, in their temporary Boston apartment, the inquisitive toddler points to a number of shapes and is fascinated by the rainbow of color.

During this quiet moment, you see the gentle outline of Naema’s central line through her tiny shirt. The lifesaving tube — surgically inserted into her chest — provides the nourishment needed to manage the rare intestinal disorder she was born with, called microvillus inclusion disease (MVID). The condition, which causes severe diarrhea and an inability to absorb nutrients, requires specialized parenteral nutrition (PN) and intravenous hydration support at home.

For the Alshehhi family, however, “home” is over 6,600 miles from Boston.

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Two life-threatening conditions.
One remarkable wish.

Lucas, who received a 5-organ (multivisceral) transplant looks over his mom's shoulderWhen Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.

“It was a gift I couldn’t give,” says his mom, Heather.

On that same day, last May, he got his wish.

“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.

Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born.

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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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In their own words: Six families share the impact of organ donation

This is the season for gratitude and giving, a time to celebrate friends, family, the end of one year and the beginning of a new one. But for a select group, it also is a time to celebrate one of the greatest gifts — the gift of life through organ donation.

Organ donation - Mickey

Mickey was born with a unique combination of congenital heart defects and spent most of his early life at Boston Children’s. He was one day shy of 6 months old when he received his heart transplant, and his family is grateful for every day since. “Mickey has shown us what courage and resiliency look like, and his transplant has taught us the true meaning of giving. He has touched so many lives and because of him, we have met so many amazing children and families, whose hearts and hopes far surpass their diagnoses.”

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