Mom steps up when daughter needs a transplant

Mom steps up when daughter needs a transplant
By Deborah Allard
Herald News Staff Reporter
Posted Jul 14, 2008 @ 11:44 PM
Fall River —

Brooke Lynn Bianchi looks like a little doll tottering around on her tiny feet.
At nearly 1½, she weighs just 15 pounds, 4 ounces — about half of what she should weigh. Brooke stands about as tall as a 10-month-old baby.
Brooke was born with end-stage renal failure. She has one barely functioning kidney and has been on dialysis her entire life.
On Sept. 2, her mother, Nicole Souza, will give Brooke one of her kidneys.
“I wanted to be the donor,” Souza said. “I’d do anything for her.”
Souza described her daughter as “lively and sociable.” She likes to play and try new foods. And, she’s right on target developmentally.
“Everywhere we go, we get comments on her eyes or her hair or how small she is,” Souza said.
Brooke was diagnosed with renal failure when she was 2 days old. But, it was not her only medical issue.
She was also born with duodenal atresia, a problem with the development of the intestines. Souza and Brooke’s father, Nick Bianchi, knew about the abnormality while Souza was still pregnant.
They were also aware that Brooke would have surgery to correct the atresia. The renal problems were a surprise.
“When they first told us, it seemed there was no hope,” Souza said. “We just don’t understand why it happened. I did everything right.”
Doctors told Souza and Bianchi that a gene mutation might be to blame for both Brooke’s conditions. They will each be tested before having additional children.
Brooke had a normal childbirth at Charlton Memorial Hospital two weeks early, was transferred to Women & Infants in Providence and then to Boston Children’s Hospital. Following the surgery to repair her intestines, she was also fitted with a hemo-dialysis catheter.
She spent three months in the hospital, and Souza was unable to feed her daughter for about a month.
“We were anxious to feed her for the first time,” Souza said.
Talk of a kidney transplant started immediately. Both her parents, and two other relatives were tested.
Souza was the most perfect match.
“It was tough at first,” Bianchi said. “I’m excited she’s getting a new kidney.”
Souza said: “I’d love to do it tomorrow.”
Both mother and daughter will be admitted to Boston Children’s Hospital on Sept. 1. Souza’s right kidney will be removed in surgery the next day.
Meanwhile, Brooke, in an adjoining operating room, will be cut from just below the breast bone to the pelvis. Souza’s kidney will be transplanted into Brooke. It will actually be placed in the front of her body, near her belly, because the organ is much bigger than Brooke’s walnut-sized kidney.
“The kidney could start working immediately or take a couple of days,” Souza said.
Souza will be out of the hospital in five to seven days and can expect to recuperate at home for four to six weeks, while Brooke will spend two weeks to a month recovering at Boston Children’s Hospital.
“I’ll be up there every day,” Bianchi said.
Brooke will take medication for the rest of her life.
She’s already been on intense medication since infancy. She takes 10 oral medications a day, a shot once a day and a growth hormone shot every Saturday, all administered by Souza.
She also spends 12 hours each night in her crib hooked to a dialysis machine. Souza can pick her up, but can only move four to five feet away from the machine.
Souza said there is a chance that the donated kidney may not sustain Brooke her entire life. She may or may not need another transplant in her adult years.
“That’s a risk I’m going to take,” Souza said. “We have a chance for a normal life.”
On Sept. 28, Souza will participate in the National Kidney Foundation Walk at Slater Memorial Park in Pawtucket, R.I. She said that if she’s still too weak to walk, she’ll sell T-shirts instead. To learn more about the walk or diseases affecting the kidneys, visit www.kidney.org.

E-mail Deborah Allard at dallard@heraldnews.com.

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