It was a routine well child check-up that showed Kelsey Beck needed a new kidney. Both of her parents were tested and her mom was the one doctors believed to be the best match.
Wisdom and experience – they’re two things that Kristin Beck relied on as a mother of a child with kidney disease.
First, she thinks of the lessons learned from her mother, Diane Black who also has kidney disease. Beck was familiar with the symptoms and treatment. She knew when her daughter Kelsey was diagnosed at the age of eight there was no quick fix.
Second, comes the wisdom heightened by a large dose of motherly instinct.
Beck’s pregnancy with Kelsey was normal and at 32 weeks she asked for a precautionary ultrasound. Her first child, Tyler, was born with tracheosophageal fistula (TEF), an abnormal connection between the esophagus and trachea. Beck and her husband, Clint, wanted to do everything they could to ensure the healthy development of their second child.
Tyler was treated at Riley Hospital for Children at IU Health, and is now a healthy 13-year-old. The ultrasound during Beck’s second pregnancy showed excess fluid. Monitoring continued until Kelsey arrived on Aug. 13, 2009, a healthy 10-pound baby. When doctors discovered the newborn was breech, a cesarean delivery was scheduled.
Over the years, that same wisdom continued for the Beck’s – keeping a bird’s eye view on their son and daughter to make sure they were raised healthy and happy. Early on when Kelsey showed signs of low muscle tone and delayed speech her parents sought early intervention. And when they noticed visual impairments at the age of six months, they took their daughter to an eye doctor where she was prescribed glasses.
But for most of her early years, Kelsey was described as one of the “happiest babies you’d ever meet.”
As conscientious caregivers, Kelsey’s parents faithfully took her to annual check ups, even when she wasn’t sick. It was one of those well child visits when they discovered Kelsey was a very sick little girl.
“The night before her appointment she was out roller skating in the driveway. She was full of energy and showed no signs of being sick,” said Kristin Beck. But on Sept. 27, 2017, the Beck’s learned that Kelsey’s kidneys were failing. She was diagnosed with Stage 5 kidney disease and was rushed to Riley Hospital.
“Her numbers were dangerously low. They gave her a blood transfusion and pumped her full of calcium,” said Beck. When they were in ER, the Beck’s were told that Kelsey would need dialysis. They chose peritoneal dialysis so they could administer it at night and their daughter could have somewhat of a normal routine during the day.
Through genetic testing Beck learned she is a carrier of a mutation – recessive gene -and Kelsey had about a one in four chance of inheriting a kidney disease. The family believes Kelsey’s disease is dissimilar from her grandmother, who was taken off the transplant list when her health improved.
Knowing their daughter was in urgent need of a new kidney, both Kristin and Clint were tested. Doctors believed Kristin’s kidney was more compatible with their 9-year-old daughter.
“We look back now and even though Kelsey was very active there were some signs. She got tired easily, she has some visual impairments, and she bruises easily,” said Beck. “If we hadn’t gone on that routine doctor’s visit, I don’t know where we’d be today.” On the one-year anniversary of Kelsey’s diagnosis the Becks sent flowers to their primary care physician to show their gratitude for saving Kelsey’s life.
But the real life saving came on a recent Thursday – the first day of August, just two weeks before Kelsey’s 10th birthday. After a sleepless night, Kristin was wheeled into the operating room at IU Health University Hospital.
“Are you the angel who is donating your kidney to your daughter?” asked anesthesiologist Dr. Ji Hyun Lee. It was the question that brought tears to Kristin Beck’s eyes.
The last time Beck was admitted to the hospital was Aug. 13, 2009 when she gave birth to that 10-pound baby girl. That same little girl is the one who loves working math problems, attending Kidney Camp each summer, eating cheese popcorn and chocolate and the same little girl who packed her favorite pillow and stuffed animals to bring to the hospital.
“It’s OK to be nervous,” Kelsey told her mom the night before the transplant. “I’m nervous too because it’s my mom.”
While Beck was at University Hospital in the care of transplant surgeons Dr. Andrew Lutz and Dr. John Powelson, Kelsey was in the OR at Riley Hospital under the care of transplant surgeon Dr. William Goggins.
This same little girl has been in the hospital more times than all of her family members combined. Yet on the night before her transplant she wore a t-shirt with the words, “Transplant Tough” and talked about her love of the hospital’s mashed potatoes, playing with her dog “Gunner,” and her new kidney that she’s named “Pee-Tea.” It’s a name she chose because “kidneys make pee and I like iced tea,” she said.
Kelsey’s bravery and candor were as much of a complement to her mom’s wisdom and experience as the kidney that they share.
And while Kelsey was calmly thinking about eating chocolate her mom was already plotting her visit to her daughter’s bedside.
“Parents are supposed to be brave for their kids,” said Beck. “The hardest thing about being her donor is that I won’t be with her through surgery. That’s also the biggest motivator for healing quickly.” Four days after surgery, Kristin Beck made her way to Riley Hospital and to her daughter’s bedside.
— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.