Sean O'Donoghue wasn't expected to survive - then he became UCLA Health's 101st pediatric heart transplant recipient
Doctors expected Sean O’Donoghue, with his multiple, severe heart defects, to die within 24 hours of birth.
That was 24 years ago.
Sean is now a healthy college student and avid golfer, after receiving two heart transplants at UCLA Health.
In 2001, Sean, then 4, became the 101st child to receive a new heart at UCLA, which is on the cusp of performing the 500th pediatric heart transplant since the program launched nearly four decades ago.
Sean and his parents are thankful and proud to be a part of the achievement.
“My son is here today because of the heart transplant program at UCLA,” said Kim O’Donoghue, Sean’s mother. “How very lucky we are that we were able to be a part of that. The gift that they give, the love that they give – they do absolutely more than 100% to get the best outcome for each individual patient.”
Sean underwent a second transplant at age 21, after his heart went into rejection. In between the two transplants, he enjoyed long stretches of normalcy but also life-threatening setbacks.
Through it all, his UCLA Health team has been a second family to him, fighting to keep him alive, just as his parents did when he was a newborn.
“They stuck with me,” Sean said of his health care team. “I’m indebted to them. There’s nothing they haven’t given me.”
The Pediatric Heart Transplant Program is overseen by Juan Alejos, MD, who is also the director of the Pediatric Pulmonary Hypertension program and clinical professor at the David Geffen School of Medicine at UCLA.
Something wasn’t right
Immediately after Sean’s birth in Orange County, where his family lives in Dove Canyon, Kim O’Donoghue knew something was wrong with her second child. His fingers looked purple. He lacked energy to suckle at her breast.
“I’m looking at him and my mom heart is saying something is wrong with this baby,” Kim said.
She asked for Sean to be examined. Her husband, Finbar O’Donoghue, accompanied the baby. He returned alone, saying Sean had gone into cardiac arrest and had been transferred to a neonatal intensive care unit.
He was ultimately diagnosed with eight congenital heart defects, including hypoplastic left heart syndrome, in which the left side of the heart is underdeveloped. He had only one ventricle, the chamber that pumps oxygenated blood to the body, instead of two.
The couple, who also have a daughter, were advised to pray and enjoy their fleeting time with Sean because his anatomy was considered too complex for a heart transplant, Kim said.
“There was so much wrong with me that nobody counted me in,” Sean said. “My mom didn’t take no for an answer and said, ‘That’s not acceptable.’”
Sean stayed in the hospital for most of his early months. Kim said miraculously he survived despite his grim odds. The O’Donoghues transferred his care to UCLA Health, where at 4 months old, Sean underwent his first open heart surgery.
Kim sought out Hillel Laks, MD, who founded the UCLA Heart Transplant Program and performed UCLA’s first pediatric transplant in 1984, on a 7-year-old girl.
When the appointment was canceled because Dr. Laks was called into surgery, Kim began camping out by his office hoping to catch him. Eventually, she did.
Kim, now 58, said she’ll never forget the loving and gentle way he touched Sean, agreeing to review his medical records.
“The ventricle was failing,” Dr. Laks, Emeritus Chancellor’s Professor of Surgery at the David Geffen School of Medicine at UCLA, said of Sean’s heart. “He was a higher-risk candidate because he’d had previous surgery. His heart failure was really severe, which affected some of the other organs.”
A second chance
Dr. Laks, who was chief of Cardiac Surgery at UCLA since 1981 and retired in 2021, said UCLA had been a leader in transplant access, both by taking on more complex high-risk patients and accepting less than perfect donor hearts.
In some cases the donor heart could be repaired or diseased coronary arteries in the donor heart bypassed prior to implantation. These donor hearts were used for urgent transplants and for high-risk patients who otherwise would not be accepted for transplantation.
“There are many transplant centers that only transplant the ideal candidates,” Dr. Laks said. “The reason for that is there’s a limited number of heart donors and you want to get the best use of those hearts. Our program was a bit more open to doing those higher-risk patients because they were the ones with the greatest risk of dying sooner and needed the heart transplant the most.”
Dr. Laks and the heart transplant selection committee put Sean on the transplant list.
The toddler required oxygen at all times. He was too weak to eat orally so a gastrostomy tube, or G-tube, supplied his nutrition directly into his stomach. On several occasions he was airlifted to the hospital after he stopped breathing.
“He’d get on the list and they’d have to take him off because he was too sick to survive an operation,” Kim said.
Sean was treated medically and improved enough that he could be put back on the list. He was now 4 years old. Ten days later, Dr. Laks performed the transplant using a heart donated by the family of a 7-year-old girl who died in an accident while on vacation.
The new heart gave Sean a normal childhood for the first time. He went off oxygen right away and within weeks had the energy to play at the park and beach.
“He started walking. He started running. He started eating,” Kim said.
His appearance changed too.
“When we saw him after the transplant, we looked at him and his lips were pink,” Kim said. “We were mesmerized by his lips because they were always blue, purple lips.”
Sean couldn’t play contact sports because of risk of injuring his chest but excelled during four years on his high school golf team.
“I was able to do everything that a normal kid could do,” he said. “I was pretty much given every opportunity. I was healthy up until my senior year of high school.”
That year, he developed pneumonia and his body began to reject his heart. Still, after graduating, he enrolled in community college and got a job at Nordstrom. But he steadily got weaker, even with treatment, including chemotherapy, seeking to stop the rejection.
The transplanted heart began to fail due to the damage caused by rejection. During his second year of college, his condition had deteriorated to the point that his UCLA Health cardiologists said he needed to be admitted to the hospital for treatment and monitoring until he received another new heart.
Dr. Laks said the longevity rate for transplanted hearts in pediatric patients is typically 15 to 20 years. Sean had been able to lead a relatively normal life for 17 years with his first heart transplant. Chronic rejection which affects the coronary arteries and the heart muscle is the most common cause of late failure of the donor heart.
In September of 2018, Sean quit his job, unenrolled from school and settled in at Ronald Reagan UCLA Medical Center for a stay that could be weeks or months.
Kim never left his side, with Finbar coming late at night and on weekends to visit and bring her clean clothes.
“We decorated the room,” Sean said. “We had movie night. We had a blast the first couple months. After it got longer, I started to get depressed. I was eventually going downhill because it took so long to get it.”
Twice, he thought he was getting a transplant, said goodbye to his family, and began getting readied for surgery, only for doctors to call it off after the heart was found to be unacceptable at the donor hospital.
“In only about one-third of potential donors does the heart actually get used,” Dr. Laks said. “There are donors who are initially thought to be acceptable but where the harvesting team on further inspection finds that the heart is not good enough.”
In addition to the disappointment, Sean’s family watched his health decline as he waited.
“He had two heart attacks,” Kim said. “He was on life support. He went through a very difficult time.
“Then we got another chance.”
A new piece of you
Sean received a new heart on Valentine’s Day 2019, this time from a 45-year-old man.
The surgery was more than 15 hours long and difficult because his doctors needed to repair his pulmonary artery, place a stent, and then transplant the heart, Kim said.
“The second I woke up I told my mom I felt like a completely different person,” Sean said. “I felt so sick before and I can’t really describe it. You get a new piece of you. It’s an energy boost, you feel so healthy.”
While his heart functioned perfectly, some of Sean’s other organs stopped working, including his kidneys.
Dr. Laks said the risk of organ failure increases the longer a patient stays on the heart-lung bypass machine used during surgery to keep the body oxygenated. Additionally, he said years of anti-rejection medications can cause chronic kidney dysfunction. In some cases the kidneys will shut down and then restart a few weeks after surgery.
In Sean’s case the kidneys never recovered and he stayed in the hospital receiving dialysis, a treatment that removes waste from the blood, for end-stage kidney failure. In all, he spent almost 13 months in the hospital.
Once Sean was able to go home, in the fall of 2019, he underwent dialysis three days a week, a process that left him too exhausted to go back to school.
“I was looking at everybody my age and they’d all moved past me in life,” he said. “They’re graduating from college, getting jobs, moving in with friends. I was always the guy that still had to worry about health.”
In time, Sean recovered more energy, but then the COVID-19 pandemic hit, sending him into lockdown with his family.
The next hurdle in his recovery was a kidney transplant. As he waited on the transplant list, some family friends, whose son died of cancer as a teenager, organized a drive seeking a living donor. A young woman, who had been a friend of the boy who died, turned out to be a match. She volunteered to donate her kidney to Sean.
In April 2021, Sean received her donated kidney. Compared with a heart transplant, Sean said getting a kidney transplant at UCLA Health was easy, with a smooth recovery. His anti-rejection medications are the same as for his heart.
Indebted to donors
Sean is now back in school and planning to get a job soon. He golfs and savors time with his friends after so much time cooped up.
He said he’s in awe of the selflessness and humanity of the families who agreed to give the hearts of their loved ones so that someone they did not know could live. He is also grateful to his kidney donor, who volunteered to take the risks and recovery from a kidney donation surgery for someone she previously had not known.
Sean and his kidney donor remain good friends.
“You feel indebted to them,” he said. “You’re just very blessed that they’re willing to donate to give someone like me a second chance. I’m truly thriving and owe everything to them.”
Dr. Laks said he’s happy and grateful that Sean and so many other young patients have received dramatic life transformations through UCLA’s Pediatric Heart Transplant program.
“That’s 500 children going from a high chance of dying to recovery and a normal, extended life,” Dr. Laks said. “I think it’s a wonderful, life-giving accomplishment. I have been so fortunate to be a part of it. ”
Learn more about the Pediatric Heart Transplant program at UCLA Health.
Courtney Perkes is the author of this article.
Pediatric Heart Transplant Program brings hope — and hearts — to UCLA’s smallest patients