Chicago teenager goes home with new heart and lungs after rare transplant
ST. LOUIS—Hospitals in Chicago and Boston told the family of Spencer Kolman that they didn't have the expertise for the rare transplant surgery, that transplanting his lungs would be too risky.
But the teen was living in his bedroom, emptying oxygen tanks like they were cartons of milk.
“We tried to figure out what is next,” said his dad, Ken Kolman, 46. “What is the best way to help Spencer?”
The next on their short list of possibilities was St. Louis Children's Hospital.
It was risky, St. Louis surgeons agreed. Spencer was very sick. Transplanting both a heart and lung could be a dangerous waiting game.
But as it turned out, going to St. Louis saved Spencer. The 15-year-old left Friday and returned home to the Chicago area, three months after getting a new heart and lungs—the only pediatric heart-lung transplant in the U.S. last year.
“It was one stroke of luck, of a miracle and of luck after the next,” his dad said.
Luck and grit. Spencer fought a rare form of cancer as a 1-year-old. He lost his mom to breast cancer. As a teen, he's had to fight for his life again.
Yet, he's thankful—just to play the trumpet again, return to Boy Scouts and maybe even the hockey rink.
His surgeon, Dr. Pirooz Eghtesady, with 200 lung transplants and 20 heart transplants under his belt, said his role as a “glorified plumber” was the easy part.
“Spencer himself is a pretty darn resilient kid ... This kid, in his relatively short lifespan, has experienced more hardships than many of us in our lifetime,” Eghtesady said. “There's no question in my mind that he has to be special and have special power to withstand everything.”
Kolman said his son's courage and optimism got him through heartbreaking news and difficult decisions.
“We came to the conclusion that if he died in the operating room trying, at least he tried, but he didn't want to go on living like this,” Kolman said. “So we said, 'All in.'”
Kolman cared for Spencer when he was 16 months old and underwent chemotherapy, surgery and radiation for rhabdomyosarcoma, when cancer cells form in muscle tissue. Spencer's mother had just been diagnosed with breast cancer.
The couple divorced. Later, her breast cancer returned. She fought for six years, enjoying time with her family as much she could, Kolman said. Spencer was 8 years old when she died.
Four years later, when Spencer was in the sixth grade, he started experiencing shortness of breath. He collapsed during a hockey practice. Tests revealed scarring in his lungs, a side effect of his cancer treatment, they were told. The scarring would slowly progress.
By the eighth grade, Spencer had to switch from the trumpet to the drums. He needed oxygen through tubes in his nose at night. By his freshman year, he needed a wheelchair to get around. He needed oxygen all the time.
Last January, the University of Chicago Medical Center began planning for a lung transplant. But doctors discovered Spencer's heart was also damaged from working so hard to make up for his lungs. The hospital gave Kolman a short list of hospitals with expertise in rare pediatric heart-lung transplants.
With relatives in Boston, the family first approached Boston Children's Hospital. Doctors there thought Spencer needed only a lung transplant. But his lungs had become so scarred and attached to the chest wall, they believed removing them would cause him to bleed to death.
Kolman was unprepared for such a hopeless prognosis. “I was devastated,” he said. “You figure you go to a top hospital in the country that it would be a doable situation.”
He had to keep trying. He and his wife brought Spencer to St. Louis to be evaluated around the first of September. Spencer needed both a heart and lung transplant, St. Louis doctors agreed.
Kolman left St. Louis thinking the worst. He had read about the difficulty of getting both organs, he said.
Pediatric heart-lung transplants are rare because children rarely need both. A patient must be at the top of both lists, for a heart and lung, because the allocation system favors the probability of saving two people instead of one, doctors explained. Many needing both have other complications to consider.
Then came the surprising call from the surgeon. He would place Spencer on the transplant waiting list and do the surgery. They had to move to St. Louis and be ready. That's when Kolman and Spencer decided—all in.
“We were talking about just trying to give him the best quality of life,” Kolman said. “But that just wasn't enough. As a parent, I would be able to live with myself.”
Spencer's step-mom was going to visit to St. Louis, so Kolman could work and stay with Spencer's older brother and younger sister. But Kolman lost his job, which he says was fate stepping in.
They arrived Nov. 10, lucky to have a friend who let them stay in an apartment he owned in south St. Louis. Spencer was so sick, though, he immediately went into intensive care.
“The docs were freaked out,” Kolman said. “They couldn't believe he was surviving like this, that he was breathing like this, that his heart was working like this.”
Spencer's test results showed he needed a ventilator, that he could go into cardiac arrest any minute. But the breathing machine could also overwhelm his weak organs, and a patient can't survive a lengthy wait on the machine.
The decisions were most difficult for his health care team, because Spencer was talking, walking around and playing with Legos.
“Sometimes you just have to stop focusing on the numbers and focus on the whole patient,” said his lung doctor Stuart Sweet.
Spencer maintained his quiet calm. He knew the organs might not come in time, he said, “but just having my dad there and stuff really helped.”
On the afternoon of Nov. 29, Kolman was shopping when he got a call saying a heart and lungs were on the way. He rushed to the hospital to be the one to tell his son the news. Nurses jumped up and down in the hallway.
“From January of that year until now, everything that had transpired was just to get him to the operating table,” Kolman said. “That was anything and everything we were focused on, just to get him to that point, just to give him that chance.”
Spencer went into surgery that night. The transplant took place in the early morning hours.
“I kissed him, and said goodbye. I was a total wreck,” Kolman said, but Spencer was brave. “He looked at me like, 'I got you,' like, 'What are you crying for?'”
Spencer has showed no signs of rejecting his new organs. He can walk on a treadmill for a mile. In St. Louis, he enjoyed the Christmas lights around Candy Cane Lane, went to two Blues hockey games and found his favorite restaurant—Pueblo Solis.
“Just to see him breathe like a normal person breathes,” said his dad. “I just keep having to pinch myself all the time. It's mind-blowing.”
The family is enjoying every day. Lungs have the highest rate of rejection compared to other organs. Five years after surgery, half will have failed. Researchers are trying to figure out why.
Spencer said he couldn't wait to get back home with his siblings and friends. He plans to take drivers education in the summer and return to classes in the fall. He's been able to keep up with his classes, even pre-calculus and honors chemistry, online.
Spencer knows nothing about the donor of his new heart and lungs, only that the person had to be close to the same size as he is. He got to send the family a letter.
“I am a Boy Scout, and now I will be able to earn my Eagle Scout award,” he wrote. “I play the trumpet in the school band and had to stop as my condition became worse, but you have allowed me to be able to play the trumpet again. I also played hockey and hope to return to the ice soon as well ... thank you for such a selfless gift.”