Kids Health Matters: Organ transplants

NEWARK, Del. (WPVI) -- Organ transplants have saved countless lives. And new techniques and medications are improving both survival and the quality of life.

Now a Delaware family is trying to make them happen for more kids.

12-year-old Yusuf Patel's road to a liver transplant actually started in mid-air, as his family returned from vacation in India.

"He started breathing really fast. He become unconscious and almost slipped into a coma," recalls his father, Irfan Patel.

Fortunately, medical professionals traveling on the same plane were able to stabilize 9-month-old Yusuf while the jet made an emergency landing in Istanbul, Turkey.

Doctors there discovered he had the genetic disorder methylmalonic acidemia (MMA).

"Your body is not able to break up the excess protein," says Patel.

Since Yusuf's birth, MMA has been added to the list of disorders newborns in Delaware are routinely checked for.

A few years later, while Patel's wife Farheen Mohamed was carrying their daughter Khadija, prenatal tests showed Khadija, too, had MMA.

So Farheen delivered the baby by Cesarean section, and Khadija was immediately taken to Children's Hospital of Philadelphia.

A very strict diet is the only treatment. But even with that, MMA affects a child's quality of life, causing serious developmental delays, "not only from the physical point of view, it's also from the emotional and mental developmental point as well," said Patel.

MMA can lead to strokes and even fatalities.

By 2013, the strict diet wasn't helping Yusuf anymore.

"He'd get up in the morning. In half an hour, he'd be so tired, it would be like he'd been up for 24 hours," his father recalls.

Dr. Elizabeth Rand, medical director of the Liver Transplant program at Children's Hospital, says that these days, most kids bounce back well after liver transplants.

"As soon as they start growing, they catch up really quite quickly," says Dr. Rand. "It's incredibly gratifying," she adds.

Yusuf now has energy that lasts all day. And Khadija was home just weeks after her transplant in March.

Dr. Rand says anti-rejection regimens are also better these days.

Instead of the dozen or more medications used in the past, most kids need "one medication twice a day by the time they're about a year after their transplant," says Dr. Rand.

And Children's Hospital is conducting a clinical trial to see which youngsters can stop taking anti-rejection drugs entirely.

While there has been an increase in deceased organ donors, the demand is higher because more diseases can be treated with liver transplants.

And there is greater acceptance of transplants.

In the U.S., altruistic donors aren't generally used children's liver transplants, because it can be a risky surgery.

At Children's Hospital, the only live liver donors used are those with a connection to the family.

But Irfan Patel says a bright future can't happen without the gift of life.

"This wouldn't have been possible without the donor families," he says, grateful for the double-blessing his family has had.

So you'll see the Patels around the area, raising organ donor awareness so other kids will get a second chance, too.

As he says, "Being an organ donor is the best legacy you can leave."