Even though he’s just 3 years old, Kaleb Perry grasps what takes most of us a lifetime to understand: Life is a gift that should be celebrated, every single moment of every single day. Maybe it’s because he beat the odds to be here. After all, doctors saved his life even before he was born.
“He has so much joy. He’s always smiling, even if it’s a hard day,” says Mandy Perry, Kaleb’s mom. “It’s weird to think of what he has been through at such a young age, but he’s full of life despite all of it.”
When Mandy was about 12 weeks pregnant, an ultrasound showed that Kaleb’s urethra was blocked, causing his bladder to become extremely large and inflated. He was diagnosed with a rare condition called fetal lower urinary tract obstruction (LUTO). Mandy was told there was nothing to be done and that Kaleb would likely not survive. It wasn’t a diagnosis the Perrys were ready to accept. They came to Lucile Packard Children’s Hospital Stanford for a second opinion.
“We met with Dr. Yair Blumenfeld, who said, ‘If your baby is willing to fight, we will fight for him.’ I get emotional just thinking about it,” says Mandy. “If we didn’t have Packard Children’s, Kaleb wouldn’t be here today.”
The decision to treat LUTO and continue the pregnancy is often a complicated one for parents, and not one that’s made lightly. If parents do decide to move forward, a multidisciplinary team of pediatric experts from maternal-fetal medicine, urology, nephrology, perinatal genetics, and neonatology guides treatment and prognosis. Both mom and baby must meet strict criteria.
“I’m incredibly proud of our entire team because we consider these situations to be solemn responsibilities. We are very thoughtful about the realistic options and best recommendations for each case, examining the risks and benefits at a detailed level, and integrating a deep understanding of the family’s goals,” says Dr. Susan Hintz, medical director, Fetal and Pregnancy Health program.
Treatment for LUTO is often just the beginning. The team weighs in from both maternal and fetal perspectives on the complexity of treatment, delivery, and the potential for urinary and kidney complications after birth.
“My husband and I work in the medical field, yet we never imagined how much was involved in treating LUTO and how everything was linked. It was a bit surprising to have so many experts at the table,” Mandy says.
Why LUTO occurs in approximately 1 in 3,000 pregnancies is still a mystery. The urine that is made and excreted by the fetus in utero is an essential component of amniotic fluid. When urine is trapped in the fetus’s bladder, the amniotic fluid may become dangerously low or disappear completely. With LUTO, the main concern is fetal lung development. In normal pregnancies, amniotic fluid surrounds the baby, allowing for movement of the chest wall. Babies also ingest some of the amniotic fluid, which fills the lungs and helps them develop. When the flow of urine out of the bladder is blocked and the lungs do not develop normally, the baby may not be able to survive.
“Treatment for LUTO doesn’t fix the kidney or bladder. Parents who go forward with treatment have to be willing to accept some degree of kidney impairment, including possible dialysis and transplant after birth,” says Dr. Blumenfeld, OB/GYN, director of the Fetal Therapy program. “The goal of treatment is to improve the survival of a potentially lethal disorder and give babies a fighting chance.”
With LUTO, some babies have only a partial blockage. Others have a full blockage, like little Kaleb.
“When there’s severe early-onset fetal LUTO, we place a vesico-amniotic shunt that lets urine flow from the baby’s bladder into the amniotic cavity. This allows the lungs to develop and hopefully become strong enough to sustain life after birth. These shunts can migrate or get dislodged after placement, necessitating multiple procedures during the course of pregnancy,” explains Dr. Blumenfeld.
Mandy underwent several minimally invasive surgeries to place shunts throughout her pregnancy. It was a stressful time for the family. Sometimes, surgeries were back-to-back.
“Even though it was challenging to have to repeat the surgery, the risks never outweighed the benefit in our eyes,” Mandy says. “We felt strongly this would develop Kaleb’s lungs and give him a chance at life, so we never hesitated.”
Doctors expect to repeat the surgery because shunts sometimes become dislodged when babies move around. Kaleb was exceptionally active.
“Our team needed to place several shunts, but that was actually good news. It meant that the kidneys were continuing to make urine, and we could assure that fluid continued to surround Kaleb during key developmental periods,” says Dr. Hintz.
After a fairly uneventful birth, Kaleb had very few breathing problems, needed no dialysis, and spent just two weeks in the hospital. The shunts did their job, allowing Kaleb’s lungs to develop and his kidneys to keep making urine, stopping further damage. Dr. Paul Grimm, pediatric nephrologist, explains that in the womb, a developing baby’s kidneys make millions of tiny filters the size of a dot. These filters are designed to last a lifetime. The damage that LUTO inflicts on the kidneys means the kidneys may not have enough filters, which may mean an eventual kidney transplant.
“Kaleb was able to maintain his own life-sustaining kidney function for nearly two years. Given we knew he would need a kidney transplant sooner or later, he had the best possible outcome,” says Dr. Grimm.
Kaleb’s family took advantage of the unique ability of Packard Children’s to provide a full spectrum of care before, during, and after birth. The hospital’s kidney transplant program is the busiest in North America. Yet, doctors know they can’t succeed with transplants without their number one partners—parents like Mandy and Kevin Perry.
“We get to know families so well that they become a part of the team. They become experts alongside us,” Dr. Grimm says.
Thanks to an altruistic stranger who came forward to donate her kidney, Kaleb underwent transplant surgery in May 2019 after waiting over a year on the transplant list. Mandy and Kevin were not donor matches, and Kaleb’s kidneys were declining rapidly. The couple was feeling desperate, so Mandy did something she wouldn’t normally do—she asked for help on social media. A mother of three who also lives in Fresno answered her plea.
“Our whole team is committed solely to giving patients like Kaleb a shot. There’s no guarantee, but if we can treat LUTO and get children a kidney, they can go from long hospitalizations and living with tubes and being hooked up every night to getting to be a child, like Kaleb, who is running around and being active,” Dr. Grimm says. “It’s incredibly satisfying.”
Kaleb seems to know that he’s got a new lease on life. Every day, he celebrates that he’s no longer sick and no longer needs constant medical care by sharing his magnetic smile with everyone he meets. He intrinsically understands that life is for living, and he’s wasting no time enjoying it. “Whenever Kaleb hears music, he’s instantly dancing and singing,” Mandy says. “He’s thriving now, thanks to Stanford and all they have done. We couldn’t be more grateful.”
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