Family reflects on fight to keep daughter alive
With mom's kidney, East Bruns. girl, 2, has a bright future
BY MARY ANNE ROSS
Correspondent

SCOTT PILLING staff Jim and Debbie Gargione are happy to have 2-year-old Gabriella at home in East Brunswick and healthy after Debbie successfully donated a kidney to her daughter.

Gabriella Gargione has all the charms of a typical 2-year-old ... big, blue eyes, curly hair, chubby cheeks and a smile that could melt the coldest of hearts.

She is very friendly, enjoys playing with her Dora the Explorer doll and chatting about her new cousin, baby Sara.

But in some ways Gabriella is very different from other little girls her age.

Gabriella was born with a rare kidney condition and for now she needs to wear a nasal gastric tube to help supplement her fluid intake. But that tube is the last vestige in a battle for survival that began before she was born.

During her mother's sixth month of pregnancy, an ultrasound revealed that the usual amniotic fluid that surrounds a baby in the womb was lacking. Doctors told them this was an indication that there was something wrong with the baby's kidney.

SCOTT PILLING staff Debbie and Gabriella Gargione enjoy a moment at home last week.

Her parents, Debbie and Jim Gargione, of East Brunswick, were mystified. No one in their family had kidney problems, and, up until that point, the pregnancy was going well.

"I was really careful about diet and vitamins. I did everything the doctors told me," Debbie said.

"One of the doctors we met with told us she wouldn't survive," Jim recalled. Others were more optimistic, saying it was likely that only one kidney wasn't functioning.

Debbie ended up spending the last seven weeks of her pregnancy in the hospital.

Gabriella was born four weeks prematurely and diagnosed with chronic renal failure. Neither one of her kidneys worked.

"It's very rare in newborns," Jim said. "As soon as she was born, they took her away. They had to put her on a respirator and hook her up to machines."

A catheter tube was placed inside her stomach, and Gabriella was put on dialysis. It would be 11 days before Jim and Debbie could hold their new daughter.

"I remember it was on my birthday, that was the first time I could hold her," Debbie said.

Those first few weeks, the couple began a grueling routine. Debbie spent her days at the hospital, doing as much as she could to take care of Gabriella, and Jim would join her there after work.

"We wanted to be with her as much as we could," Jim said. "The hardest part was watching her suffer. They would have to take blood work a couple of times a day and that's so hard with a tiny baby. Their veins are so small and she would cry."

When Gabriella turned 6 weeks old, they were able to bring her home. In addition to all the usual things new parents learn, Debbie and Jim had to learn how to use the dialysis equipment and all its accessories. They had to mix the bags of fluids, prime the machine and be certain that the catheter tube was kept clean. They set all of it up in their bedroom.

Gabriella was on dialysis 16 hours a day. Treatments would start at 8 p.m. and last until noon the next day.

"As she got older it became a real challenge. The one tube was 6 feet long so she could move around. We had her toys all over the bedroom and would sit with her," Jim said.

There were frequent trips to the doctor for monitoring.

"Sometimes we would have to stay overnight if the blood work wasn't right," Debbie said.

At one point Gabriella was back in the hospital for six weeks.

"They said they were going to name a wing after us," Jim recalled with a smile.

Debbie and Jim had to wait until Gabriella was 2 years old before they could consider a transplant.

"The baby has to be big enough to handle an adult kidney," Jim said.

Debbie was able to provide a match for her daughter. This meant another long stay in the hospital, but with more hope on the horizon.

The surgeries went well for both mother and daughter, and with her mother's kidney, Gabriella's health has improved dramatically. The couple said their daughter can now look forward to a normal life.

"It's amazing. In the past six months her energy has increased, she laughs more. She is even more ticklish," Jim said.

Gabriella will always need to take immune suppressant drugs, and for now she must continue to use the nasal gastric tube for fluids.

"With an adult kidney she has to take in a lot of fluids and it really would be difficult without the tube, but eventually she won't need it," said her mother.

The couple was very pleased with the medical care they received.

"Our nephrologist at Saint Peter's University Hospital, Dr. Anup Singh, is not just a great doctor but he is a caring and compassionate man. And Susan De Angelo, the nurse who took care of Gabriella in the hospital, was wonderful. So was the staff at Saint Barnabas [Medical Center] where we had the transplant," said Debbie.

Through this ordeal the couple has relied on each other for strength.

"Sometimes I have to be strong for Debbie and sometimes she has to be strong for me," Jim said.

Debbie's inner strength and positive attitude, he said, should serve as an inspiration for anyone dealing with such adversity.

"Debbie gave up a successful career as a corporate space planner, in addition to making numerous other sacrifices, and never complained," Jim said. "Even when she was going to surgery, she never expressed fear. She always remained positive and strong, and is truly an inspiration to myself and to others."

The couple said they also received a lot of support from neighbors, friends and family, and noted that they relied on their faith in God.

"There was so much uncertainty," Debbie said. "When you have a baby, you just expect to be happy, but we were never sure what would happen. We really had to take one day at a time or it would be overwhelming."

Jim has advice for other couples who might be going through something like this:

"Never give up hope," he said one evening last week, watching his daughter hug her favorite doll.