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.” 

A birthday wish granted

Multivisceral transplant recipient Lucas
Lucas and Dr. Vakili

Lucas St. Onge was a very sick boy when he was born. Diagnosed in utero with severe short bowel syndrome, doctors didn’t expect him to live, but his mom Heather demanded a second opinion. When they arrived at Boston Children’s he was only two months old. A test revealed he also had a rare, genetic condition called “severe combined immune deficiency (SCID),” which meant, he would need a bone-marrow transplant — immediately. His then five-year-old brother was a match.

But the bone-marrow transplant merely bought time, lessening his SCID symptoms. The short bowl syndrome remained. Lucas needed a multivisceral transplant.

On his 5th birthday, after nearly two years on the waiting list, he asked for something his mom knew she couldn’t give him. “He told me, ‘I want a transplant, so I can be a normal kid.’ says his mom Heather. “So, when I got the call that day. I didn’t believe it.”

Lucas received his birthday wish — a new intestine, liver, stomach, pancreas and spleen. “He’s doing awesome. His face, his color, his eye color, he has meat on his bones. It is a huge improvement, and I couldn’t have asked for a better transplant team with the best surgeons Dr. Heung Bae Kim and Dr. Khashayar Vakili. They are so loving and caring and always there when I have a question.”

He wore his heart on his back

Deyven wore a VAD in college, while waiting for a heart transplant

Waiting for a heart transplant used to mean living life in a hospital room. But a ventricular assist device (VAD), or a mechanical pump that supports heart function, makes it possible for older children and adults with heart failure, to be discharged home and do virtually everything people with functioning hearts do. This even means going to college, which is what Deyven Ferreras was able to do. He became the first person ever to live on a college campus with a VAD.

“I try not to let what happened to me dictate how I live my life,” he says. “I learned something about myself from this experience. I learned that I am responsible, and I can manage anything.”

Today, the Bentley University sophomore is no longer living with a VAD. He’s thriving with the new heart he received last spring.

A heart and lungs for Christmas

Heart lung transplant recipient Nicole

Born with a ventricular septal defect and pulmonary hypertension, from a very early age, Nicole Kouri began making trips to Boston Children’s Hospital from her home in Miami, Florida. Initially, doctors told her she would need a lung transplant but soon decided a heart-lung transplant was the best option. This coming Christmas, Nicole and her family will celebrate her one-transplant anniversary — the day she received a new heart and a pair of lungs.

“During our darkest moments, we found the most beautiful comfort in the care and compassion of the nurses and the doctors, in the kindness of cafeteria workers, in the support of the Hale Family Center for Families, in the smiles of the cleaning staff,” says Nicole’s mom Becky Villaescusa. “Every conversation, every home cooked meal, every kind word, crazy dance, new treatment, every funny card, every quilt made with love and every caring gesture Nicole received, were vital to the miracle the Pediatric Transplant Center team performed on Christmas Day.”

Two-time, double-lung transplant recipient is living large

Double-lung transplant recipient Hunter

Seven years ago, every breathe was a small miracle, but today, 8-year-old Hunter Williams, a two-time double-lung transplant recipient is making a splash. “He swims all the time,” says his mom Kristen Williams. He can’t get enough of it.”

Hunter was born with a rare condition called “pulmonary vein stenosis (PVS).” His family was told by doctors near their home in Colorado Springs, Colorado, that there was no treatment. “Letting him die wasn’t an option,” says Kristen. “After learning about a PVS study at Boston Children’s, we met with the transplant team and even with his grim prognosis, they gave us hope.” The Williams family eventually decided to move to Massachusetts so he could receive his ongoing care by the team they had grown to trust at Boston Children’s.

Hunter received his first gift of life at 21 months old, and following chronic rejection, he was transplanted again at 7 years old. Every day is a new reason to celebrate.

A miracle for Julian

Kidney transplant recipient Julian

“I wanted to give him the best opportunity to live,” says Julian Molina-Cordero’s mom Liz. In utero, Julian was diagnosed with a condition called posterior urethral valves, a blockage in the urethra caused by extra tissue growth that prevents the normal flow of urine and damages organs. “In Springfield, [Massachusetts], they told us they were not ready for a birth like Julian’s. They didn’t have ECMO [Extracorporeal Membrane Oxygenation].”

So Liz arranged to give birth to at Brigham and Women’s Hospital, where Julian could be transferred immediately to Boston Children’s and placed on ECMO, a technique that functions as a replacement for a critically ill child’s heart and lungs. At 40 days old, he had an endoscopic ablation to remove the blockage in his urethra, at 8 months a gastrostomy tube was inserted into his stomach to deliver nutrition, and at 10 months he had a dialysis catheter placed in his abdomen. And when Julian was nearly 2, he received his new kidney.

“Julian is doing very well and continues to make strides at school,” says Liz. “Even though he is non-verbal, he tries to make sounds and show me what he wants. I will do my best to continue to share our journey in order to teach others how important organ donation is and how it has changed our lives.”

Learn more about the Boston Children’s Pediatric Transplant Center.