As a neonatal intensive care nurse, Heather Bankos has seen up close the heartbreak that comes when babies are born fighting for life, when they don’t make it and — perhaps worst of all — when complications from birth mean women who have lost children will never again be able to conceive.
Bankos, a 31-year-old mother of three, has spent nearly a decade giving her medical attention and comfort to families on their most joyous and difficult days, but she wanted to do more.
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So she gave her uterus.
In May, Bankos, who lives in Macungie, near Allentown, donated her uterus to a stranger through a uterus transplant clinical trial at Baylor University Medical Center in Dallas.
Uterus transplant is an experimental procedure that enables a woman who does not have a functioning uterus to become pregnant and give birth. Baylor researchers estimate that absolute uterine factor infertility, meaning the uterus is nonfunctioning or nonexistent, affects from 500,000 to three million U.S. women of childbearing age.
Still in its early days, receiving a uterus transplant involves major surgery, costs about $200,000, and isn’t covered by insurance. But researchers are hopeful that uterus transplants can one day become more widely available for women who want to bear a child themselves but were born without a uterus, had to have theirs removed, or whose uterus does not function.
“It’s more than donating an organ. It’s donating an entire experience of being pregnant and giving birth,” said Liza Johannesson, a gynecologic surgeon and medical director of uterus transplant at Baylor.
When Baylor launched its uterus transplant trial in 2016, doctors were overwhelmed with responses from women — women who wanted to donate their uterus.
Within two weeks, at least 200 women had called, asking how to be donors. Now there are hundreds of women from 41 states on the donor list, Johannesson said.
“All of a sudden we have women reaching out to us wanting to give up their uterus,” she said. “We didn’t know why these women wanted to give up part of themselves.”
She and her colleagues were thrilled, but surprised.
Organ donation programs often rely on deceased donors. When live donors are involved — such as in the case of kidney and liver transplants — they are often giving to a family member or close friend.
All but a couple of Baylor’s donations have been from live donors. In nearly all cases, the women donating their uterus did not know and never met the recipient.
As Baylor’s researchers worked through the list, vetting potential donors, they got their answer.
“They all say they want to give an experience they had themselves, that it was very important to them to carry their babies,” Johannesson said. “I think that’s kind of beautiful.”
Bankos had been considering becoming a surrogate — in which she would become pregnant and give birth to a child for another person — when she read about Baylor’s program and knew she wanted to participate.
She made her first trip to Dallas last fall, for a slew of medical tests to see whether she was a good candidate.
Potential donors meet with a gynecologist, a transplant surgeon, and a psychologist to go through every physical and mental detail of the process. If doctors decide they’re a good candidate, the women are called when they are matched with a recipient.
Bankos’ husband, Brendon, was supportive. Together they put away a little extra money each month to pay for travel to Dallas, and planned for her to be off work for 12 weeks of recovery.
Donors’ medical services are covered by the trial, but they must pay for their own travel expenses.
“We were in agreement that I was going to help somebody," she said. "I was just waiting to find somebody who needed me.”
The donation procedure typically starts with making a cut from the belly button to pelvic bone, and takes four to six hours.
Bankos was one of the first Baylor patients to avoid that big incision by having her uterus removed robotically. The procedure takes longer this way — up to nine hours — but leaves just five centimeter-long incisions through which surgeons can operate. This option also means a much shorter recovery time.
The procedure does not involve removing the ovaries, so donors will not go through menopause prematurely.
“It’s a perfect organ to give away,” Johannesson said. “Once you’re done with it, you really don’t need it anymore. It’s not a kidney or part of a liver you may need later in life.”
Johannesson and her colleagues aren’t alone in seeing the potential of uterus transplants.
A Swedish study produced the first baby in the world to be born to a woman with a uterus transplant in 2014.
Penn Medicine launched its own clinical trial in 2017. The trial has screened 250 potential recipients and 25 living donors, but has not yet done a transplant.
The Penn program initially was limited to deceased donors, but recently expanded to living donors because recent data from other programs showed smaller risks for the donor than initially expected, said Kate O’Neill, an ob-gyn who co-leads Penn’s uterus transplant program.
“This is such a rapidly evolving field,” she said. “There’s so much we don’t know yet.”
She said about 50 transplants have been done worldwide so far, including 10 with organs from deceased donors.
Even though uterine transplants are not lifesaving — and thus more ethically fraught than vital organ transplants — she believes they should be an option.
“Just saying women can adopt or do surrogacy does not do justice to the complex issues around how women build their families,” O’Neill said.
For the woman receiving the organ, the transplant is just the beginning.
Transplant recipients require in vitro fertilization to become pregnant, and must take powerful immunosuppressive drugs for as long as they have their donated uterus, so the body does not reject the organ.
In Baylor’s clinical trial, women will be able to keep their donated uterus for no more than five years because of the toll immunosuppressive drugs take on the body, which can include a high risk of cancer. They can sustain no more than two births, Johannesson said.
In December 2017, the first baby was born to a transplant recipient at Baylor by cesarean section.
Bankos returned for the surgery in May. She’d been matched with a stranger who needed her.
She was nervous but excited, too. She thought about her three children, now ages 3, 6, and 9, and remembered what it was like to know them before they were born.
“Having that special bond between you and that baby — they’re kicking and no one else knows,” Bankos said, recalling how overwhelming it was to hold each child after hours of difficult labor. “It’s a great feeling and I wish everyone could have it.”