Two brothers, One diagnosis - Part 2

With the help of the Nephrology team at Children’s, Maria Alias and her husband came up with a treatment plan that would allow their two sons with kidney failure, Najib and Safie, to maintain as regular lives as possible.

They elected for both of them to do peritoneal dialysis at home every night while they slept instead of coming to Children’s three times a week for hemodialysis treatments. That allowed them to minimize school absences by only having to visit Children’s for monthly lab workups.

Educators from the Nephrology department – which treats more pediatric dialysis patients than any other hospital in North Texas – then trained them how to operate the home dialysis machine during an intensive three-week session.

“They’re a fantastic family,” the boys’ nephrologist, Dr. Katherine Twombley, said. “They’ve done everything we’ve asked of them to take care of their sons.”

Kidney transplant could be in Najib’s and Safie’s future. One benefit of them being seen at Children’s is that the staff who works with them in the Nephrology department is in constant collaboration with the team in the Transplant department.

“All effort is made to make the transition from dialysis to kidney transplant as seamless as possible,” Dr. Mouin Seikaly, a nephrologist and the medical director of renal transplant at Children’s, said. “The Nephrology and Transplant teams collaborate to make sure there is no disruption in the process for patients or their families.”

In the meantime, Najib is bouncing around everywhere acting like he’s Spiderman, and Safie is playing video games like any other third grader. Yet, it’s likely that the only way they will be able to continue to live with such vitality in the long run is to receive new kidneys.

April is National Donate Life Month, and Children’s is encouraging everyone who is able to register to be an organ donor by registering at http://donatelife.net/. It’s free, only takes about a minute to do and saves lives.

“The need is real when you consider the facts,” Stephen Pottoore, administrative director of Nephrology, said. “Someone is added to the transplant waiting list every 10 minutes. On average, 18 people die each day waiting for a transplant because of the shortage of donated organs.”

Two brothers, One Diagnosis - Part 1

Maria Alias had no idea what nephrophthisis meant when she brought her two sons, Safie and Najib, from Malaysia to America in 2005.

But she learned very quickly in the summer of 2011. The boys’ father noticed that Najib, then 6, had uncontrollable tremors in his hands one morning in July when Maria was out of town. By the time she returned, Najib had been given the strange-sounding diagnosis at Children’s. It meant his kidneys were failing him.

She didn’t even have time to process Najib’s diagnosis when 8-year-old Safie developed a continuous nosebleed in August. She and her husband knew by then that nephrophthisis was genetic.

So, instead of taking Safie to the closest emergency room to their Kaufman home, they brought him directly to Children’s, assuming he had the same disease as his brother. And their assumption was right.

The boy’s nephrologist at Children’s, Dr. Katherine Twombley, had never seen anything like it. Out of the hundreds of patients she had treated for various kidney ailments, she’d never had two brothers with nephrophthisis. And the fact that both presented within a month of each other made their situation even more unusual – and challenging for their mother.

“It was very difficult to deal with,” Maria said. “But I didn’t have a choice.”

Come back to our blog tomorrow morning to learn how the Children’s team is helping Maria take care of her two boys.