After years of searching for a viable kidney for their daughter, Kristel and Craig Storm found a match far closer to home than they had expected.
Craig, whose kidney was previously deemed incompatible due to antigens his daughter Leah produced in response to vaccines, was finally able to donate to Leah on July 23. The procedure took six hours in total, with Leah at Boston Children’s Hospital with her mother and grandfather, and Craig next door Brigham and Women’s Hospital with his mother-in-law.
The couple said this week that Leah is recovering more quickly than her father and is already dancing, singing and playing, like three-and-a-half-year-olds do. Her family hopes that this will be the end of 12-hour dialysis sessions via a peritoneal port in her stomach.
“It feels pretty amazing,” said Craig of his opportunity to give a most precious gift to his own child. “I felt from the very beginning that this was always meant to be. I always felt like, I know it sounds corny, but I felt like my kidney was Leah’s from the beginning. I was just taking care of it until she was big enough to take it. I’m feeling good and she’s feeling good. She conquered another surgery with no problem and we couldn’t be more blessed with that.”
This February, Leah was scheduled to receive a kidney, which would be obtained in a swap for her father’s kidney, from a good Samaritan in Boston. However, it was found at the beginning of this year that this kidney would not be a match.
Leah, who will be turning four on Nov. 5, far surpassed the expectations of Vassar Brothers Medical Center staff; doctors were alarmed by the baby’s condition when she was born by emergency c-section in 2015, and gave her a short life prognosis. She was then diagnosed at Albany Medical Center with congenital heart disease, end-stage renal failure, a missing left ear and an absence of genitals.
“We still don’t have a name to her syndrome, if she even has a syndrome,” said Kristel. “We’ve done genetic testing and nothing has come back and no one knows. It is frustrating for family planning.”
From that initial prognosis until now, Leah’s quality of life has steadily improved. Since her birth, fundraisers were conducted to cover initial hospital bills a year after her birth, to help pay for an ultimately successful open-heart surgery and another procedure when three inches of her small intestine needed to be removed after they were strangled by a hernia in 2017.
Besides the marvels of modern medicine, Leah’s survival thus far is owed to her tenacious parents and an outpouring of support from the Saugerties community. Thanks to local fundraising efforts, including money raised at a Centerville Fire Department fundraiser, another at Krause’s Chocolate and a $16,000 check from Sawyer Motors, the Storm family was able to afford a hotel room in the vicinity of Boston Children’s Hospital, where the procedure was performed. Because Leah developed sepsis after the procedure, she will need to stay in the hospital until next week, and remain in the Boston area for an additional two weeks in case complications arise.
“We’re hoping she will start kindergarten next year,” said Kristel. “Hopefully next year will be her one-year mark [with her new kidney] and she’ll be healthy enough to start school. Those are our dreams, those are our goals for her.”
Kristel and Craig Storm, high-school sweethearts who graduated from Saugerties High in 2008 and 2006 respectively and got married in 2013. Leah’s round-the-clock care has precluded her mother from continuing her old job as the team leader at Target; likewise, Craig is on medical leave from his job at Krause’s Chocolate, so money raised for the family also contributes to their day-to-day needs.
Currently, Leah receives at-home services from the Saugerties School District, including speech therapy and therapy to teach her to eat normally. Currently, because of her renal failure, the three-year-old eats via a nasogastric tube which goes up her nose and down into her stomach.
The family hopes that, after her kidney takes, the child will be able to eat normally. However, since a port in her stomach will hopefully no longer be needed for dialysis, she will have a gastronomy tube installed if she is unable to eat normally. In a year or two, Leah will be scheduled for cosmetic surgeries to replace her missing genitalia.
According to the University of Iowa medical center, a donated kidney lasts around 12 years on average. The longest-lasting transplanted kidney in medical history has filtered toxins in its receiver’s body for 40 years. Leah’s doctors suspect that she will need three to four additional kidney transplants in her lifetime.
“This will always be her hurdle, this is a lifelong disease,” said Kristel. “Just because she got a kidney transplant doesn’t mean there’s a cure, it’s a form of treatment.”