Twin operations bring sibling revelry
Two kidney transplants just hours apart seen as family's medical miracle
ANTIOCH >> With the same rare genetic liver disorder, 19-year-old Molly “Carswell” Ouimet and her 11-year-old brother Matthew have formed a special bond that includes not only advocating for organ donations and keeping each other's spirits up but also traveling together to San Francisco several days a week for dialysis.
And now after a lifetime of doctor's appointments and medical treatments, the two have received the life-saving gift of kidney transplants, miraculously all within hours of each other at UCSF Benioff Children's Hospital in San Francisco.
The elder sibling learned of a possible match on a Friday. Carswell was finishing dialysis when a nephrologist asked “Would you like a kidney?” Dad Kelly Ouimet was across the room, heard the commotion and thought something was wrong.
“I thought it was for medical reasons, and it was all because they were celebrating,” he said. “I said, `Are you sure?' `Is this real?'''
Mom Kristi Ouimet was cautiously optimistic because she knew from past experience with her son, that things don't always work out even when a kidney is donated. “I was trying to be calm about the whole thing,” she said, noting their bags have been packed for months in anticipation of a transplant.
Dr. Marsha Lee, director of UCSF Benioff Children's Hospital's pediatric dialysis unit and the kids' primary nephrologist, had said it was uncommon for siblings with the same disease to be on dialysis and be awaiting a transplant at the same time.
But the chance that both kids would find donors at nearly the same time after waiting a year or more is rarer still, Kristi Ouimet later learned. Neither the surgeon who had performed nearly 2,000 such operations, nor any of the other medical professionals involved, had seen anything like it before with siblings having nearly back-to-back kidney transplant surgeries.
Uncannily, Matthew had earlier that day said he felt they would get a call with an “offer,” the term used for an organ donation. The next day he told his uncle he knew he would get another call that day, and indeed a few hours after Carswell's surgery, a match had been found for him.
The same surgeon at UCSF, Dr. Ryutaro Hirose, would end up performing both siblings' surgeries one day apart on April 9 and 10.
“A lot of things have happened in our family that are unique, and you just kinda roll with it,” Kristi Ouimet said. “Some nurses have joked that, `We have the Ouimet wing here.'”
The siblings' kidney troubles stem from a rare genetic liver condition called primary hyperoxaluria Type I. Another son, Patrick, 16, does not have the disease.
The disease had progressed differently in each, with first Matthew being diagnosed at 5 months old, and having to undergo dialysis and a double liver/kidney transplant
at 2½ years old. But over the years, his kidney began failing, and by February 2021 he was back on hemodialysis.
His sister, meanwhile, had enjoyed a mostly normal teenage life, her father, Kelly Ouimet, said. But in 2020, Carswell's condition worsened and required hemodialysis.
Over the past year, the Ouimets have traveled nearly 50 miles to San Francisco for dialysis treatments at a pediatric clinic and back to their Antioch home at least three times a week.
Having new kidneys means the world to them, their mother said, noting it will be the first time in a long while the siblings won't be tethered to dialysis.
Both children are now recovering doors away from each other — and comparing notes. Their scars are nearly identical and mirror one another, their mother said.
“He (Matthew) asked about his kidney, and I told him the doctor said it was nice and big. Bigger than the one Carswell received,” Kristi Ouimet said. “He thought that was funny and stuck his tongue out.”
The kidney was placed next to his original donor kidney from a young soldier, Brandon Burnett, who died in a car accident years ago. Matthew also received Burnett's liver. The youngster calls him “his hero.”
“Matthew wanted to see his scar so I took a picture and showed him,” his mother said. “I told him his new kidney was under that scar and next to Brandon's kidney. … He's like, `I'm gonna relax because you know, Brandon's here and he can help get this new kidney settled in. I'm just gonna rest now.”
The family doesn't know Matthew's new donor nor the person who donated to his sister, but they say they are grateful for their “selfless acts” and hope to find a way to honor the donors.
“It's always a really tough thing to know that someone is dying, you know, someone's death is going to affect the availability of the organ,” Kristi Ouimet said.
“But they're not just organs to us. They are people who have lives, and we're very fortunate to know Matthew's previous donor's family. I think that connection is what's really helped me process and get through this aspect of it,” she said.
If caring for two sick children and advocating for organ donors were not enough, since last summer, the Ouimets have been helping a Nepalese man who suffers from the same disease. Govinda Regmi and his wife, Mira Basnet, are temporarily staying with the Ouimets as he receives experimental drugs, dialysis and also waits to get on a transplant list.
It's all in a day for Kristi and Kelly Ouimet who have been fierce advocates for their children and others who suffer from the same disease or need organ transplants. Sharing their story is not only therapeutic and educational but it helps to encourage people to become organ donors, they said.
“It's watching our story unfold and seeing how far we've come,” Kristi Ouimet said. “It's pretty remarkable, and if there's ways that we can prevent people from going through those hardships that we went through, it's a nobrainer. It's just when people need something, you help them and it's not just in our neighborhood, you know, it's globally.”