“Everything is wonderful!” Zucely Mendez now says about her daughter, Maria, 9.
It wasn’t always that way. When Maria was born, her kidneys were unusually small and did not function properly. Medication helped, but her kidneys functioned less and less.
When she was 5, Maria began dialysis to remove wastes and excess fluid from her bloodstream – at first three times a week, later four times a week.
In July 2019, when she was 8 years old, Maria became the 500th kidney transplant patient at Texas Children’s Hospital.
She benefited not only from the skill of her surgeon, Thao Galván, MD, MPH, but also from a large, capable team, developed over the years since the hospital’s kidney transplant program was begun by Eileen Brewer, MD, in the early 1980s.
“It’s not only experience, in terms of absolute numbers, but also longitudinal experience, and a very special and remarkable group of people who work here,” said Michael C. Braun, MD, professor and section head of nephrology (kidney disorders) in the Department of Pediatrics at Baylor College of Medicine and chief of nephrology at Texas Children's Hospital.
During dialysis, Maria Mendez participates in a visit from the Houston Ballet, sponsored by the Arts in Medicine program.
Home to one of the largest kidney transplant programs in the country, Texas Children’s nephrology section moved up to No. 2 in the 2019-2020 U.S. News & World Report survey of Best Children’s Hospitals.
“One thing that makes our program particularly successful is that we have a large, multidisciplinary team that’s invested in the success of the transplant program. That includes administrative support, transplant coordinators, surgeons, urologists, radiologists, nursing staff, physicians, advanced practice providers, dietitians, social workers, psychologists, Child Life specialists and Quality of Life coordinators,” Braun said.
“The team that cares for these children is really focused on trying to get that patient healthy enough to be transplanted and on ensuring that the patient's medical environment is optimized for the success of that transplant. It's a large group of people who are very passionate about caring for children with kidney failure, who are really focused on patient-centered and family-centered care,” he said.
Maria Mendez shared the most common cause of kidney failure in children – congenital anomalies of the kidney and urinary tract. Other causes are primary kidney disease, inflammatory diseases like lupus, and complications from other medical conditions, such as cancer and heart problems.
Many kidney diseases can be managed medically, but when a child’s kidneys no longer function, a transplant is the best option for survival and quality of life.
“Some patients can have what’s called a preemptive transplant, which means they don’t go onto dialysis before the transplant. Unfortunately, we can’t do that for everyone. How long they end up staying on dialysis is very patient-specific. Some patients are on dialysis for a very short time. Other patients can be on dialysis for years waiting for a transplant,” Braun said.
Some children have peritoneal dialysis at home every night until they get a transplant. Like some others, Maria traveled from her home in Galveston to Texas Children’s for hemodialysis lasting four hours, three to four times a week, every week, until her transplant.
Because of dialysis, Maria was not able to go to school. The Quality of Life program at Texas Children’s arranged for her to have homebound education.
“Life on dialysis is complicated and very demanding on patients and families. It’s also quite restrictive about what they can eat and how much they can drink,” Braun said. “The care of these children, both preoperatively and postoperatively, is pretty intense.”
Maria remained in the hospital for two months after her transplant. After release from the hospital, patients are seen in the nephrology clinic two or three times a week, then once a week, then once a month, and eventually, every three months. The experience after transplant is a transformation from life with dialysis.
“You can imagine, from having your existence centered around the machine that you are required to be on to stay alive, to having a life that’s free of machines. You still have to take immunosuppression medication at very specific times for the rest of your life to keep your kidney transplant functioning, but still it’s a huge improvement,” Braun said.
Patients often take additional medications, such as for blood pressure control, anemia or bone health. Some of them also take nutritional supplements. Nutrition is especially important to help the children grow and to make up for any problems caused by chronic illness before the transplant.
“We take a very holistic approach to patient care, to try and ensure that their nutritional intake is not only balanced for their kidney, but also good for their long-term health,” Braun said.
The difference between being on dialysis and having a transplant is a return to normalcy. Although patients are asked to avoid full-contact sports like football, they are encouraged to engage in an active lifestyle, including athletics.
“We’re so grateful and happy that Maria received her transplant,” her mother said. “She feels better; most of her food and drink restrictions have been lifted; and now she’s able to attend school full time. Maria is thriving.”
Part of the Mendez family’s gratitude is to the family that donated the kidney of their deceased loved one. The Texas Children’s team transplants kidneys in children from infants to young adults, using kidneys from both living and deceased donors.
“Kidney transplant is only possible because of people’s altruism. The vast majority of kidney transplants come from deceased donors. It’s incredibly important to recognize that transplants could never happen without people’s ability, often in moments of terrible grief, to have thoughts of donating the organs of a deceased loved one to benefit someone else. Kidney transplant in children is really a gift of generosity and love by people they never know,” Braun said.
“Our team has an opportunity to take someone who has kidney failure and keep them alive and growing on dialysis until they’re well enough to get a kidney transplant. The impact of kidney transplant is to change patients’ lives for the better forever. It’s really amazing.”
For the medical team and for patients and their families, nephrology is a complicated field that can have a huge positive impact.