Eileen Harlin didn’t tell her parents and confided in only one of her four siblings when she decided to swallow her intense fear of needles and get tested as an organ donor for her mother, who in 2021 developed a condition that wrecked her liver.

“She never would have agreed to it,” Eileen said about her mother, Julia Harlin. “What if something went wrong?”

Imagine Julia’s quandary when her daughter was her only match for a liver — and again, about a year later, when she needed a kidney.

Faced with yearslong waits for both organs, time doctors weren’t sure she had, Julia had the liver transplant in August 2022 and the kidney transplant in December 2023. The back-to-back surgeries were among just over a dozen such liver-kidney “dual living organ donations” ever performed across the country.

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Eileen Harlin was the only organ donor match for her mother, Julia. (Kaitlin Newman/The Baltimore Banner)

Living organ donations number in the thousands a year, but dual donations — giving two of any organs at once or sequentially — remain rare, with just over 100 ever performed around the globe, according to a paper published last year in the journal Clinical Transplantation. There is a massive shortage of organs for patients who need transplants, particularly those who need kidneys.

All U.S. organ donations totaled about 46,000 last year, according to the United Network for Organ Sharing, a nonprofit managing the transplant system for the federal government.

The University of Maryland Medical Center, where the transplants were performed, had not gone looking for a dual donor, said Dr. Daniel Maluf, a transplant surgeon at the hospital who was on both Harlins’ transplant teams. “It was the first one here.”

A living donor can donate all of a kidney, because most people have two, or part of another organ, including a liver, pancreas, lung or intestine. The liver regenerates in the donor after a portion is removed.

The matching process is rigorous, not just to determine if a donor is compatible, but if the donor is up to it physically and emotionally and understands the risks, said Maluf, a transplant surgeon for more than two decades. He said doctors consulted with a panel at the medical center to consider the ethics of the surgeries.

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They wanted to be sure Eileen was “doing it for the right reasons,” said Maluf, also a professor of surgery in the University of Maryland School of Medicine.

Donors need to be comprehensively informed about the procedures, risks, potential benefits and alternatives before they consent, said Elisa J. Gordon, a professor in the Department of Surgery and the Center for Biomedical Ethics and Society at Vanderbilt University Medical Center.

Dual donors must understand they will have either two major surgeries or one longer, more complex one. Each comes with risks such as infections, and for kidney donors, an increased chance of kidney disease post-donation. However, there are still too few cases to fully understand the short- and long-term risks of dual donation.

Then there are the ethical considerations of performing surgery and removing organs or parts of organs from healthy people.

“Donors are doing this for no direct medical benefit to themselves,” Gordon said. “That challenges the principle of nonmaleficence, the obligation in medicine to do no harm. Technically, we are harming someone. But doing the harm becomes ethically acceptable when there is enough of a benefit, such as saving a person’s life. So, we need to carefully ensure that the benefits outweigh the risks.”

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Donations are often for family or friends, like the donations between the Harlins.

Weeks after the successful second transplant, Julia, now 71, and Eileen, 39, were recuperating at Julia’s house in Frederick. Eileen showed a vertical scar down her stomach from the liver removal and a few small marks from the laparoscopic cuts where doctors removed her kidney.

Thanks to her daughter Eileen’s organ donations, Julia Harlin will soon be able to resume Monday breakfasts with friends and playing with her 12 grandchildren. (Kaitlin Newman/The Baltimore Banner)

Eileen, who lives in Pennsylvania, feels mostly back to normal and is even doing some part-time administrative duties for the orthodontic practice in Baltimore County where she works. She plans to soon return full-time. Julia plans to soon resume regular Monday breakfasts with friends, traveling and playing with her 12 grandchildren.

These were things she didn’t think possible when she learned she had a condition known as nonalcoholic steatohepatitis, or NASH, cirrhosis in 2021. It’s caused by fat deposits that lead to swelling and extensive liver damage. She would need a transplant, though the wait list given her age and condition could be five years. In the meantime, she had to go regularly to the hospital to drain fluid that was accumulating. One time, the equivalent of five two-liter bottles of soda was collected.

Julia initially refused to have her children tested, since most of them had their own small children at home and she feared the risks and even the recovery.

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“How would they even pick up their babies after surgery?” she thought.

But Eileen, the fourth-youngest sibling, had no children and a plan. She’d quietly see if she was a match, a process that takes months. She told only one sister, the youngest sibling, who wasn’t sure it was a good idea.

When Eileen was a confirmed match and presented the findings on Mother’s Day, “We all cried,” Julia said.

The liver surgery was a success, and after close to a year, both had a normally functioning organ. That was just in time for more bad news.

“Do you have a kidney doctor?” asked one of Julia’s physicians ahead of a diagnosis of hepatorenal syndrome, more damage related to liver failure. Julia would need a new kidney, and this wait could be longer. As Julia quickly deteriorated, three siblings were tested. Again Eileen was the only match. So in December, she gave her mom a kidney.

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Eileen thought, why not give another organ if her mother was willing and able to go through another surgery?

“I thought, if she can do it, I can, so let’s get it on the schedule,” she said. “I hope other people realize this is something you can do.”

Meredith Cohn is a health and medicine reporter for The Baltimore Banner, covering the latest research, public health developments and other news. She has been covering the beat in Baltimore for more than two decades. 

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