NORTH READING - Sarah Pastore wears dainty ballerina shoes. She can’t yet do “tippy toes,’’ but she scoots on her bottom. Her blue eyes seem to dance as she presses colorful letters on a talking alphabet toy. She loves to play with big brother John Paul’s Matchbox cars, too.
At 15 months, Sarah is resilient. She was born with only one kidney, and it was failing. Doctors told her parents, Nancy and Robert, that their only daughter would die unless she had a kidney transplant. “It was devastating news,’’ recalled Nancy, 43. “But at the same time, at least there was an option to help her.’’
Her parents were among seven people screened as potential donors. But it was her uncle, Anthony Pastore, 32, of Woburn, who was found to be the right match. Ten days before Christmas, and one week after Sarah’s first birthday, uncle and niece endured a combined eight hours of surgery at Brigham and Women’s Hospital and Children’s Hospital Boston.
Doctors at Brigham and Women’s removed Anthony’s left kidney. The adult kidney, which is about as big as a fist, was placed into a plastic bag, packed in ice, and placed in an insulated container. It was hand-carried across a footbridge connecting Brigham and Women’s to Children’s Hospital. Sarah’s doctors then transplanted it into her tiny body during a four-hour procedure.
And with an uncle’s gift of life to his niece, a new kinship was born.
“She’s my baby,’’ Anthony said, smiling as Sarah played at his feet. “There is a part of me that is with her. It’s so special. I call just about every day to see how she’s doing.’’
With both Anthony and Sarah recovering well, the Pastores hope to encourage others to become organ donors.
“We want to bring it to the attention of people, that adults can donate a kidney to a child,’’ Nancy said. “They can give life, and still live their own life.’’
“There may be people out there who are reluctant,’’ added Robert, 43. “But the hospitals work with you to prepare you and put you at ease. In our case, we got lucky. Everything fell into place when my brother was a match.’’
Toddler kidney transplants are rare. Of the 91,000 people on the waiting list in the United States today, only 181 are under age 5 and just two are a year old or younger, according to the United Network for Organ Sharing, a nonprofit that tracks data for the government.
In the case of a child, a parent or relative is often the right match because they are more likely to have the same blood type, and have fresh, healthy tissue.
“Every single case is unique,’’ said Dr. Stefan Tullius, chief of transplant surgery at Brigham and Women’s. “In the search for a kidney for a baby or a child, you will most likely find someone in the family who is the [matching] donor. . . . Parents are usually younger, and therefore more likely to be healthy.’’
Sarah was among the youngest transplant patients in the 41 years Brigham and Women’s and Children’s have collaborated on pediatric kidney transplants.
“It’s not common,’’ said Dr. William Harmon, chief of transplant surgery at Children’s Hospital. “There’s probably only a handful of children as young as she is [in the United States] that need to have this done.’’
Adults are often surprised that their kidneys can be transplanted into a child. A baby can’t have a transplant until his or her aorta is about the same size as an adult’s renal artery, to ensure proper blood flow. “We waited about a year for Sarah’s aorta to be big enough,’’ Harmon said. “It typically takes about a year. In general, Sarah grew very well. Her parents were able to get enough nutrition into her.’’ For her first year of life, Sarah was fed through a nasal tube. She also received medicine through the tube, and needed shots. Her parents had to check her diapers to make sure she was passing urine. There were regular trips to Boston hospitals, and help from visiting nurses. But the family’s routine was tested. Both parents had to keep working. Nancy’s employer, Analog Devices of Wilmington, has let her work from home since Sarah’s birth.
“I’m really grateful for that support,’’ said Nancy, who works in human resources and carries the health insurance for the family. “It’s made this so much easier for us.’’
The first round of donor testing was held in June. Of seven family members and close friends tested, Anthony was found to be the right match, based on his age, blood, and tissue compatibility. Still, Robert didn’t want his brother to feel any pressure to donate a kidney. “I told him, ‘I don’t want you to be a hero,’ ’’ Robert said. “Your priority has to be your family.’’
Anthony and his wife, Nicole, have a 18-month old son, Christian. “We had to think about what this could mean for our family,’’ said Nicole, holding Christian. “What if he needed a kidney someday? He couldn’t be able to donate. . . . But then, we also knew that this could give Sarah life.’’
Anthony also felt the tug of brotherly love. They are two of seven kids born into a close Italian family in Somerville. They both now work for Blue Cross Blue Shield, Robert as an analyst and Anthony in technology services. As one of the oldest in the family, Robert often took care of his younger siblings while their parents worked in a tailor shop. “All of my life, my brother has looked out for me,’’ Anthony said. “I’ve always felt so close to him. To see him in such pain, worrying if his daughter would live, it was tough. . . . I’m happy I was able to help. I feel great, and Sarah is doing great.’’
Sarah still has a feeding tube, but she’s starting to gnaw on Cheerios. She squirms when her mother administers her antirejection drugs, but smiles when “Dr. John Paul’’ arrives to help. That’s the nickname Nancy has given to her son, who loves to help care for his little sister.
On the verge of walking, Sarah kicks her legs when she hears her father or brother come through the door. She loves to watch “Dora the Explorer’’ on TV, and “Dumbo’’ is a favorite bedtime story. “Her personality is really coming through,’’ Nancy said. “She’s not fragile. She’s a fighter.’’