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Young Manchester mother and teacher waits for liver transplant
New Hampshire Union Leader - 7/29/2019
Jul. 29--A Feb. 4, 1991, feature story in the Union Leader headlined "Infant Battling Liver Disease" introduced readers to little Kerry Forbush.
The Manchester baby had been diagnosed with a rare disease called biliary atresia just a few weeks after her birth. She underwent surgery at Boston Children's Hospital, where surgeons created new bile ducts from the infant's own intestine. The surgery was a success.
Kerry Forbush, who just turned 29, is a mother herself now. The specter of liver disease that hung over her childhood has materialized. She needs a liver transplant.
The question wakes her up in the middle of the night, Forbush said: "Am I about to get the call?"
That would be the call from Massachusetts General Hospital, telling her that a donor has been found. "It takes me forever to get back to sleep," she said.
Forbush talked about her hopes and fears in an interview in the backyard of her home on Manchester'sWest Side last Friday. Her busy 21-month-old daughter, Willow, was playing nearby under the watchful care of Forbush's mom, Laurie Kempf, who has been at her daughter's side throughout her long medical journey.
"It just breaks my heart to see her going through this," Kempf said. "I wish it could be me instead of her."
Kempf said most children diagnosed with biliary atresia only make it to their teen years before needing a transplant. Because her daughter's health was good until last year, she said, "I think her chances are better now at getting through the transplant than they would have been if she had to have it when she was an infant or even a teenager."
Forbush hides her exhaustion from her own little girl. And she's putting together a photo book for Willow to look at while she's in the hospital for the transplant and recovery. But she knows it will be difficult for her daughter; the two are practically inseparable.
Forbush remembers getting sick in first grade (it was an infection) and being at Boston Children's Hospital for a long time. But after that, other than annual visits to her Boston specialist for a checkup and lab tests, she had a normal, happy, active childhood.
She always knew there was something wrong with her liver, she said, but it never slowed her down. She played soccer, softball and basketball. After graduation from Manchester High School West in 2009, she got her degree in early childhood education from NHTI and became a preschool teacher.
It was Kempf who, while sitting at her dying mother's bedside last fall, noticed the telltale signs of jaundice in her daughter. Lab tests and scans confirmed that Kerry's liver was failing and her bile ducts were not draining.
Forbush was put on the waiting list for a donor liver in January, and doctors implanted catheters on both sides of her abdomen to drain bile. She also is enrolled in a clinical trial at Massachusetts General Hospital that allows patients to receive livers from donors who were hepatitis C positive, something that previously was not permitted. Now that a treatment for Hepatitis C exists, those organs are acceptable for transplant.
The program started about a year ago and has been very successful, Kempf said. Doctors told them more of these organs are becoming available. "Because of the opioid crisis, more young people are dying," she said.
Kempf, who retired a year ago as a customer services supervisor for Southwest Airlines, has devoted herself to supporting her youngest daughter through all of her medical appointments and whatever is to come.
Forbush has an overnight bag packed for whenever she gets the call. And Kempf said no one in the family makes plans to go very far afield these days, in case that call does come.
"Our lives are on hold," she said.
The family has gotten a lot of support.
A GoFundMe campaign spearheaded by Laurie Kempf's cousin has already raised half of its $30,000 goal to help defray medical expenses. The staff at Primrose School in Bedford, where Forbush teaches, held a fundraiser to help.
With deductibles and co-pays, Forbush's medical expenses have already added up to $10,000. And her daughter couldn't purchase disability insurance because of her condition, Kempf said. "They know they're going to end up paying out someday," she said.
Forbush continues to work, and you wouldn't know how sick she is from her upbeat disposition and ready smile.
Kempf said her daughter's positive attitude is amazing.
"She just takes everything in stride and she doesn't complain," she said. "She's just accepted it, and she's grateful she had good health for as long as she did, and she was able to have a child before she got sick."
In New Hampshire, it's easy to sign up to be an organ donor, just by indicating so on your driver's license. Kempf hopes reminding readers of her daughter's condition will inspire more people to take that step.
"People need to really think about donating their organs, because they could save so many lives," she said.
Most people don't realize how important checking that box can be, Forbush said: "You're giving someone that can have a second chance, a second chance."
Forbush is engaged to Willow's dad, Matt Stidd; they're postponing the wedding celebration until after she's well.
She also likes to think she'll have two birthdays to celebrate from now on, "the day I was born and the day I get my new liver."
(c)2019 The New Hampshire Union Leader (Manchester, N.H.)
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