It is late in the evening on June 14, 2015. Kern Tyler and his wife Pasina Mazoka-Tyler sit in a waiting room at Boston Children’s Hospital, while their 11-month-old son Malambo Mazoka-Tyler, born with a life-threatening disease called biliary atresia, undergoes a liver transplant.
To arrive at this moment, they have traveled vast distances, visited multiple hospitals, sought the advice and counsel of numerous doctors, packed all their belongings and moved more than 7000 miles from their home in Zambia, Africa, to Boston, Massachusetts.
He had picked out what he wanted to wear, where he wanted to be buried, and he told me, ‘My soul is all I have left. If I don’t have a liver, I am going to die.’
Yet, they call this journey a blessing.
In the same room, a family from Maine patiently waits, while their son is prepped for his liver transplant.
Born with cystic fibrosis, 18-year-old Brent Groder is battling end-stage liver disease. Just two months earlier, he was planning his funeral, recalls his mom Charlene Newhall. “He had picked out what he wanted to wear, where he wanted to be buried, and he told me, ‘My soul is all I have left. If I don’t have a liver, I am going to die.’”
Saving two lives instead of one
Kern and Pasina knew Malambo would receive a piece of a liver to match his body size, meaning he would have what’s called a split-liver transplant, in which the organ of the deceased donor is split in two. But what they didn’t know — at least at first — was that the family of the boy receiving the other portion of the liver was sitting in the very same room.
“During conversation, we discovered our kids had the same doctors,” says Pasina. “And suddenly, it dawned on us — they are each getting a piece of the same liver.”
“If we can increase the number of split livers from 120 to 200 — an increase of less than two percent of all livers transplanted each year — it would make grafts (donor organs) available to virtually every small child on the waiting list,” says Kim. “With that increased availability, we could save almost all those children.
Brent had been waiting for his liver transplant since September of 2014. The wait was excruciating.
“While we were waiting, we had to bring Brent to Boston Children’s to be examined for a bowel blockage; the liver team was shocked to see how significantly he had declined,” Charlene says. “Dr. Kim and Dr. Fawaz said he would not be getting discharged until he was transplanted.”
The morning of June 14, 2015, Brent did not open his eyes. “I told Dr. [Rima] Fawaz, ‘He’s dying.’” Charlene recalls. “That was the day we learned they had a new liver for Brent.”
The journey to transplant
There are moments that change everything. One of those moments was October of 2014, when Kern and Pasina learned Malambo had a blockage in his liver. It was this moment that brought them from their home in Zambia to Johannesburg, South Africa, where Malambo would receive a Kasai procedure to replace his damaged bile ducts with a piece of his intestine.
But even after a successful Kasai procedure, his jaundice did not go away, and the bile wouldn’t flow. The Mazoka-Tylers were told Malambo would need a transplant.
“Our month in South Africa was a difficult time for us,” says Kern. “When he was born, we thought Malambo was completely healthy. Having a sick child was all so new to us.”
A transplant in South Africa can cost up to a million dollars, money the Tylers didn’t have. But they were willing to move mountains for Malambo, and as a U.S. citizen and Boston native, Kern knew where they needed to go next. During their time in Johannesburg, Pasina’s sister and brother-in-law had welcomed them to their home, and now, Kern’s cousin would offer his family’s home and support in Massachusetts for the next step in their journey.
The day after Christmas, the Mazoka-Tylers departed for Boston.
“I really feel like we were meant to be here, looking at all the different places we have been, all the different people we have met — all of it leading up to being here at Boston Children’s with these specific surgeons,” Kern says. “What they do is beyond amazing. It really does give life to families who are sometimes reeling and hurting.”
Waiting and seeing
Malambo’s eight-hour surgery is followed by Brent’s 12-hour surgery. The families spend most of the night talking, laughing and playing charades, not full of angst or worry — but joy.
“It was one of those times where we were meant to be there in that room with that family, us giving our support, them giving their support,” says Kern.
As night turns to morning, the Mazoka-Tylers receive word Malambo is in recovery and they can see him. It is afternoon before Charlene and Brent’s dad Timothy Groder are finally able to see Brent.
“Dr. Kim told us it was a very difficult transplant,” says Charlene. “It was the first time I had ever seen him show concern. ‘Wait and see,’ he told us. That’s Dr. Kim’s favorite phrase. And that’s what we would do — wait and see.”
Malambo’s recovery has been remarkable. He is gaining weight and growing fast. Brent, on the other hand, has struggled. After his surgery, he remained at Boston Children’s for five and a half months. It wasn’t easy for him or his mom, but Kern and Pasina visited often, bringing care packages and meals.
“They were there for me to listen to my fears, to lend a shoulder for me to cry on; they lifted me up and made me smile,” says Charlene. “Their family will forever be a part of ours.”
It is amazing that the boys are bonded through this blessing. Life always sends more gifts than you expect.
Brent is better now, and on a cloudy morning in March, he returns to Boston Children’s for a checkup at the Liver Transplant Clinic. Pasina brings Malambo for a visit — and a photograph. It will be the first one of them together. With compromised immune systems, it wasn’t safe for the boys to be within close proximity during the first few months following their liver transplants.
But today, Malambo, who Brent affectionately calls “my liver brother,” sits in Brent’s lap — smiling.
“It is amazing that the boys are bonded through this blessing,” says Pasina. “Life always sends more gifts than you expect.”
Learn more about the Boston Children’s Liver Transplant Program.