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Pandemic baby boom: Baylor’s uterus transplant program grows to No. 1

Dallas Morning NewsNovember 20, 2020Articles

During an otherwise bleak time, doctors at Baylor University Medical Center in Dallas have good news to share: Since the start of the COVID-19 pandemic, five women who thought they would never be able to bear children gave birth to healthy babies.

The infants arrived thanks to a new procedure that Baylor helped develop: uterus transplantation.

The string of successes makes Baylor’s program the largest in the U.S. and one of the largest and most successful in the world. At least three other hospitals in the U.S. — the Cleveland Clinic, the Hospital of the University of Pennsylvania and the University of Alabama at Birmingham — have uterus transplant programs, as do hospitals in at least a half-dozen other countries, including the United Kingdom, Belgium, Germany and Sweden.

The procedure is for women who are either missing their uterus or whose uteruses cannot sustain a pregnancy, a condition known as absolute uterine-factor infertility. About 1 in 500 women fall into that category. Their options for becoming parents are limited to adoption and surrogacy.

Since 2016, Baylor, which is part of the nonprofit Baylor Scott & White Health system, has performed 20 womb transplants from live and deceased donors and delivered a total of 12 babies. Two more women are pregnant, and three are in the final stages of in vitro fertilization, or IVF.

“We don’t really care about being the first or the biggest,” said Dr. Liza Johannesson, an obstetrician and gynecologist who co-leads Baylor’s program and helped pioneer this surgery in Sweden. “The only thing we’ve cared about from the beginning is to try to get this to work and to reach as many women as we possibly can.”

OB-GYN Dr. Liza Johannesson and transplant surgeon Dr. Giuliano Testa have grown Baylor University Medical Center's uterus transplant program into one of the largest and most successful in the world.

OB-GYN Dr. Liza Johannesson and transplant surgeon Dr. Giuliano Testa have grown Baylor University Medical Center’s uterus transplant program into one of the largest and most successful in the world.(Lynda M. González / Staff Photographer)

The first baby born to a woman with a transplanted uterus arrived in 2014, to a Swedish team co-led by Johannesson at the University of Gothenburg.

Baylor is wrapping up a five-year clinical trial of the procedure and is now offering the surgery to all those who qualify. A 90% success rate among the hospital’s final group of 10 women shows that, at least at Baylor, uterus transplants have evolved “from an experimental procedure to an established solution,” Baylor doctors wrote in a recent journal article. The hospital estimates the surgery, which is not covered by insurance, will cost patients $250,000 to $300,000.

While doctors celebrate the arrival of a new treatment for a previously untreatable form of infertility, some have raised questions about the procedure’s risks and say it highlights the unhealthy pressure society places on women to bear children. Others say it underscores broader issues of access to infertility treatments.

‘What makes you a woman’

More than 1,000 women applied to receive a uterus through the trial, the hospital said.

“You’re taught at a young age that being able to have a baby is what makes you a woman,” said Alicia, 39, who delivered baby Ayla at Baylor in late April. She and her husband, Soner, didn’t want their last name used to protect their privacy.

Alicia found out when she was 16 that she’d been born without a uterus — a condition that affects around 1 in 5,000 women. “You’re finding out at such a pivotal time in your life, and you don’t know what to do with it,” she said.

For years, she wondered, “What makes me a woman? What makes me this person that someone wants to love and share a life with?”

In 2007, she met Soner in her hometown of Shreveport. After two weeks of dating, she told him she couldn’t carry a pregnancy, and he said they would figure things out together.

In 2016, the couple was living in Istanbul, where Soner was working, when they learned of Baylor’s transplant program on Good Morning America. Soner’s Islamic faith forbids surrogacy, Alicia said, so a uterus transplant was their only hope for having a child born to them. They applied to Baylor and were accepted into its trial.

To start the process, Alicia and Soner underwent IVF to make sure they could produce viable embryos. The hospital’s research foundation covered the cost of the transplant, but trial participants had to pay for IVF, which costs $10,000 to $15,000 per cycle on average, according to the Society for Assisted Reproductive Technology.

In the spring of 2017, she received her uterus from a deceased donor. Waking up with the new organ, she said, she finally felt whole. After more time went by, she had a second realization: She was the same person now as she was before the surgery.

“I had gone into this thinking that I would change, that I would become this great person,” she said. After years of feeling different from other women, she said, the surgery allowed her to accept herself as she had always been.

A few months after the operation, doctors began to transfer embryos into her uterus. The first several attempts failed. Then, Alicia suffered a miscarriage. In the summer of 2019, she became pregnant. She delivered Ayla this past April.

“Knowing that I was growing life inside of me, something that was once impossible, was amazing,” she said.

A mother meets a donor

Baylor doctors were surprised by the number of women — more than 600 — who volunteered to donate their organs to the program.

“I did not expect that,” said Johannesson. In the first Swedish study, all the donors were relatives or close friends of the recipients. “All of a sudden, we had women from all over the U.S. wanting to give us their uteruses.”

Nikki Wehmeir, 39, of Los Angeles donated her uterus one year ago. She works for a company that specializes in egg donation and surrogacy, has two children of her own and happened to have been born at Baylor. “Making babies is kind of my passion,” she said. “So, donating my uterus just fit right in with everything that I love about life.”

Marianne Wood-Clark and her husband, Christopher Clark, hold their 2-month-old baby, Lydia Danielle Clark, at the Baylor Tom Landry Fitness Center in Dallas on Saturday, Nov. 7, 2020.

Marianne Wood-Clark and her husband, Christopher Clark, hold their 2-month-old baby, Lydia Danielle Clark, at the Baylor Tom Landry Fitness Center in Dallas on Saturday, Nov. 7, 2020. (Lynda M. González / Staff Photographer)
Wehmeir paid her own travel expenses to fly to Dallas several times for screening and surgery. Although the operation involved the latest technology — doctors performed it using a robot, which minimized the size of her incisions — it took 13 hours. Wehmeir then stayed in the hospital for three days as doctors monitored her recovery. The pain, she said, was no worse than what she experienced in childbirth.

The surgery, she and Johannesson said, did cause a minor bladder complication that is common after hysterectomies. “I have to be really careful when I sneeze, or I’m going to pee my pants,” she said. She added that it was a small price to pay for another woman to be able to experience childbirth.

Wehmeir came to Dallas recently to meet her recipient, Marianne Wood-Clark, her 2-month-old daughter, Lydia, and Wood-Clark’s husband, Christopher. Wearing masks and keeping their distance at a park near Baylor, the two exchanged gifts and bonded. “I can’t describe the feeling [of] meeting her,” Wood-Clark wrote on Instagram afterward. “The gift she gave us. I felt like I was in the presence of greatness, wrapped up in a super cool and down-to-earth chick I want in my life forever!”

“I can’t describe the feeling [of] meeting her,” wrote Wood-Clark (center) about her uterus donor, Nikki Wehmeir (left).

“I can’t describe the feeling [of] meeting her,” wrote Wood-Clark (center) about her uterus donor, Nikki Wehmeir (left). (Lynda M. González / Staff Photographer)

The pandemic put a damper on the new moms’ experiences, cutting them off from family and friends at a momentous turning point in their lives. Lineisha Marshall, 33, of Fort Worth gave birth to a baby at the end of May and was sad to not have her mother by her side.

“That was really hard for me,” she said. “I kept asking the nurses, ‘Are you sure she can’t come? Are you sure she can’t come?’” But her fiance, Brent Pointer, was by her side, and she now sees her mother, grandmother and sister nearly every day. “I’m super blessed to be put into this position,” she added. “I wouldn’t change anything.”

Baylor’s success rate

The Baylor team’s success rate has improved with time. In the first trial of 10 women, which ran from 2016 until 2018, five of the transplants failed and had to be removed. In the second trial, nine out of 10 transplants succeeded.

Dr. Giuliano Testa, the lead transplant surgeon for the trial, said success came with an improved ability to identify viable uteruses. Initially, Baylor accepted donors ages 40 to 65. Now they’ve learned that, at least in the U.S., premenopausal women make the best donors. They now accept donations from women ages 30 to 50 with no history of hypertension or diabetes.

Surgical techniques have improved, as well. The first 13 donors had open surgeries that left large incisions in their lower abdomens. The doctors have since moved to an all-robotic surgery that causes less pain, less blood-loss and allows for a shorter recovery time.

Lineisha Marshall with her baby son, Broaddrick

Lineisha Marshall with her baby son, Broaddrick (Lynda M. González / Staff Photographer)

Finally, doctors were able to shorten the time between surgery and embryo-transfer, so the recipients are on immunosuppressive drugs for less time.

Complications of the procedure for recipients have included abdominal bleeding, signs of organ rejection and blood clots that have led to the loss of the transplant. For donors, negative outcomes have included infection, bleeding and surgical complications that have required follow-up surgeries.

“Overall, the end result is very promising and looks very good,” said Dr. John Petrozza, chief of the division of reproductive endocrinology and IVF at Massachusetts General Hospital. “But there were a fair number of complications, and I think it’s still a learning process.”

Still, Petrozza said he would recommend the surgery to patients with absolute uterine-factor infertility.

Women are allowed to keep their transplant until they have two children, or for up to five years. But a majority opted to have their uteruses removed after the birth of their first child, said Johannesson.

Ready for prime time?

Testa and Johannesson’s next step is to spread awareness of the surgery to more women and doctors and to persuade insurance companies to cover it.

As it stands, not enough fertility treatments are covered by insurance, said Petrozza, who also serves as president of the Society of Reproductive Surgeons. “A lot of fertility services are skewed toward white women,” he said. “Black and Hispanic women struggle to find access to fertility treatments. Although this is a fantastic technology, it’s really going to limit this to women who can afford it.”

Lisa Campo-Engelstein, an expert on reproductive and sexual ethics at the University of Texas Medical Branch in Galveston, said fertility treatments are often considered “not real medicine.”

“By saying that people should pay for reproductive technologies out-of-pocket, what we’re saying is they’re not important,” she said. “And I think what we’re saying there is that women’s health is not important, because too often we conflate reproduction and women. And we neglect to see the ways in which men are reproductive beings with reproductive needs.”

Two-month-old Lydia Danielle Clark eats while being held by her parents, Marianne Wood-Clark and Christopher Clark.

Two-month-old Lydia Danielle Clark eats while being held by her parents, Marianne Wood-Clark and Christopher Clark.(Lynda M. González / Staff Photographer)

But some doctors feel uterus transplantation is still too risky to take mainstream.

“The desire for pregnancy is so strong that some women are willing to risk their health in order to have a baby,” wrote Dr. Robyn Horsager-Boehrer, chief of obstetrics and gynecology at UT Southwestern Medical Center’s William P. Clements Jr. University Hospital, in an online article about uterus transplantation last year. She added that women can become mothers in a variety of ways and that uterus transplantation was not worth the risks. She declined a request for an interview but said the blog post was not written in criticism of any particular program.

Dr. Belinda Yauger, deputy chief of obstetrics and gynecology at San Antonio’s Brooke Army Medical Center, said she is not yet ready to recommend the surgery to her patients.

“It’s still a very new procedure,” said Yauger, who also chairs the reproductive endocrinology and infertility subcommittee of the American College of Obstetrics and Gynecology.

Medical groups are working to make the surgery safer, less costly and more standardized. The Society of Reproductive Surgeons has plans to create a registry that will follow every transplant recipient in the United States to learn more about the procedure’s long-term effects

As of the end of October, 31 uterus transplants had been performed in the U.S., and six women are on a waitlist for uteruses, according to the United Network for Organ Sharing.

As more hospitals perform the surgery, uterus transplantation will likely gain acceptance, say experts.

That’s what Johannesson and Testa are working for. “We have wanted this to be a procedure that is offered to teenagers when they sit there with their doctor and they think they don’t have any options,” said Johannesson. “We want their doctors to be able to say to them, ‘This is a devastating moment for you, but in the future, this might be an option that you can go for.’”