Dara Kass didn’t need to be a doctor to know that something was seriously wrong with her third child, little Sammy.
At birth, Sammy was smaller than his two siblings. He barely grew. His skin looked orange. He was listless. Later, his belly swelled. “Everything was a little off,” says Dara, who’s an emergency physician.
Testing showed the problem to be “Alpha-1,” which was damaging his liver.
The inherited condition occurs when both parents pass on a faulty gene. The result is an improperly folding protein that should exit into the bloodstream, but instead stays trapped in the liver, causing scarring. Sammy’s condition was life-threatening.
Dara, now 40, and her husband, Michael Kass, 45, decided to do everything they could to save him — so Dara donated a segment of her liver as a living donor.
The Kass family lives in Park Slope, Brooklyn, and the intricate surgery occurred at New York Presbyterian – Columbia University Medical Center, a leader in such transplants.
Nationwide, only around 4 percent of liver transplants involve living donors. Last year, around 10 percent of those were parent-to-child, according to the United Network for Organ Sharing.
The liver is the only solid organ that regenerates. A liver segment from a living donor, rather than a deceased donor, ensures a fresh, healthy liver. “There is minimal but existent data that shows mother-to-child donation for a different liver disease has a better outcome than father-to-child,” Dara says.
The Kasses wanted to give Sammy the best possible chance. “I never thought about the risk to myself,” Dara tells PEOPLE. She signed on in a heartbeat.
The family scheduled the transplant right around Sammy’s second birthday, celebrating with cake in the hospital.
A segment of Dara’s liver was cut out, flushed with a preservative solution, wrapped in three sterile plastic bags and packed in a cooler on ice, says Dr. Adam Griesemer, who worked on both mother and son sides of the transplant team.
Michael, who works in the investment field, was concerned about the liver’s trip between the main hospital, where Dara was, and the adjacent children’s hospital, where Sammy was.
“Do they wait for the light to change and then cross the street?” he wondered. (No, the route includes a skybridge. Dr. Griesemer and a helper walked the precious cargo across.)
The trip was uneventful. “I was asleep,” Dara says. “I was freaking,” her husband says.
Sammy’s old liver was removed and the new segment sewed to his blood vessels.
“Sammy’s liver will continue to grow with him as he turns into an adult,” Dr. Griesemer tells PEOPLE. “It stays exactly the right size for the rest of his life.”
The U.S.’s first living liver transplant occurred in 1989. For donors, the death rate is around 1.7 per thousand, and the risk of a catastrophic outcome is around 3 per thousand.
In the Kass case, all went well. Except for a small belly scar, Sammy resembles any other kindergarten graduate. Still, he must manage his condition.
“He knows that having had a transplant is as much a part of his identity as having brown hair,” Dara says.
He takes anti-rejection medication daily. The liquid is measured in a syringe and squirted into his mouth morning and night.
“It tastes like lemonade but it doesn’t,” Sammy says.
Now, his friends’ parents stock syringes. “When his friends take medicine, they want to take it the way Sammy does,” Dara says. “For a kid with a continuous medical condition, normalizing what he goes through is critical.”
Now, exactly four years post-transplant, Dara has left her job at a hospital in downtown New York City and started a new position uptown, at the very hospital that saved her son’s life.
“I wanted to work at the place I felt the most emotionally connected to,” Dara tells PEOPLE.
Dara is also an advocate for women in emergency medicine and co-founder of FeminEM.org, a resource site.
Sammy is now 6, along with brother Charlie, 8, and sister Hannah, 10, he lives a city-kid life, with school, sports and summer camp.
Dara is grateful for the family’s resources, which allowed them to save Sammy.
Her insurance paid for the surgery and recovery care. She had the ability to take three unpaid months off from work. Otherwise, being a living donor might have been impossible.
“I never forget how lucky we are,” she says.