Bilateral Renal Hypoplasia and Kidney Transplant: Rory’s Story

Rory was born prematurely, at 35 weeks. He initially did well, but over the next few months, health problems began to emerge. He was slow to gain weight, and he vomited frequently. Rory also had low muscle tone and cognitive delays. His parents, Kelly and Freddy, took him to a number of specialists throughout his first year, but none were able to diagnose the cause of his problems beyond a general label of failure to thrive.

Diagnosis with chronic kidney disease

At 15 months, blood work showed a high level of creatinine, a sign of poor kidney function. An ultrasound confirmed that Rory had a condition known as bilateral renal hypoplasia. His parents were told that Rory would likely need a kidney transplant and that they should take him to a hospital with expertise in treating children with chronic kidney disease.

Kelly and Freddy called Children’s Hospital of Philadelphia (CHOP), two hours away from their home in northern New Jersey, and made an appointment with Jorge Baluarte, MD, an attending physician in the Division of Nephrology and Medical Director of the Kidney Transplant Program.

Planning for a kidney transplant

After reviewing Rory’s history and test results, Dr. Baluarte confirmed that Rory would need a kidney transplant, but not immediately. His kidneys were functioning at about 20 percent of a healthy level, which was enough, with careful attention to diet, to get him through the next few months in order to build up his strength and weight. He would need to be bigger to have room in his abdomen for the donor kidney.

Dr. Baluarte prescribed a diet high in calories and protein, extra vitamin D and calcium for bone health, and careful monitoring of the acid-base balance in his system. He also put Rory on a growth hormone.

Dr. Baluarte, Kelly and Freddy also began the discussion of possible donors. Kelly was pregnant at the time, so she wasn’t eligible. Freddy’s blood was tested, but his blood type was incompatible. Family members asked to be considered as donors, and Kelly’s brother, Kyle, was found to be a good match. He and Rory had the same blood type and the same set of six antigens. Kyle volunteered without hesitation.

Rory came back to CHOP for monthly examinations by Dr. Baluarte and the transplant team, including transplant surgeon, Peter Abt, MD. A few months later, his team decided that Rory was strong enough for the kidney transplant.

A successful transplant

On the day of the surgery, Kyle had one of his kidneys removed at the Hospital of the University of Pennsylvania (HUP). Across the street at CHOP, Dr. Abt transplanted it into Rory.

Rory bounced back from the kidney transplant surgery quickly. The creatinine level went down to a very healthy level. He was up and out of bed in three days, and released to go home twelve days after his surgery.

“He seemed better right away,” says Kelly.

“He hadn’t been talking before his surgery, and he started talking soon after we got home. He had an appetite for the first time.”

Rory had been getting therapy for motor delays since he was 6 months old. After the transplant, Kelly says, “the motor issues solved themselves.” He continued to receive occupational and speech therapy for the next couple of years, but he needed less and less support over time.

A happy and very active little boy

Now 6, Rory is a happy and active little boy. He plays soccer and likes to boogie board at the beach during the summer. He wears a guard under his jersey when he plays soccer to protect his kidney. Rory loves Legos, especially superhero figures, and he enjoys drawing and coloring. Kyle lives in the same town. He has two children of his own now, and he has a special relationship with Rory.

Rory comes into CHOP every three months to see Dr. Baluarte, and they continue to have a special relationship, too. “Rory is always happy to see Dr. Baluarte,” says Kelly. “The two of them clicked from their first meeting.”

“We are blessed to have CHOP for Rory,” says Kelly. “It’s a two-hour drive, but it’s worth it."

“The entire team there is so awesome. At the time of the transplant, they had someone for every aspect of the process. It was the total package. And the team is still there for whatever we need.”