After Kayla Edwards completed her final cycle of in-vitro fertilization, she debated taking a pregnancy test. The thought of another failed pregnancy was daunting — she already lost three.
She decided to give it a shot. When the test read positive, Edwards was elated. Carrying a pregnancy was a joy she never thought she would experience.
With the uterus transplant that she received months before, giving birth was finally a possibility. At 16, Edwards learned she had a condition called Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, which causes the vagina or uterus to be either underdeveloped or absent. While pregnancy seemed like a far-off dream, reports of a woman in Sweden who delivered a child after transplant gave Edwards hope.
“There was finally someone like me that was actually giving birth to a child, from a uterus that wasn’t hers,” Edwards told MedPage Today. “I thought, this is an option. But can I really have it?”
When she enrolled in a clinical trial at Baylor Scott & White in Dallas, Edwards’ life revolved around the transplant. She moved to Texas, and had doctor appointments once a week after she received the new organ.
But Edwards was able to enjoy carrying her own pregnancy. She had a C-section at 36 weeks, and her doctors explanted her uterus after she gave birth to her daughter, Indy.
More hospitals are opening transplant programs for patients like Edwards. Next year, Johns Hopkins University will join others in the U.S. — including the University of Pennsylvania, the Cleveland Clinic, and Baylor Scott & White — in providing transplants to patients with uterine-factor infertility.
Many programs offer transplants only through clinical trials. However, Baylor’s program provides the procedure outside of a clinical trial, and Johns Hopkins will do the same.
Uterus transplant has taken off over the last decade. The first live birth after a uterine transplant occurred in Sweden in 2014, and since then there have been around 50 transplants to date, resulting in at least 16 deliveries.
The first births after transplant occurred in patients who received a uterus from a live donor. But in 2018, clinicians delivered the first baby whose mother received a uterus from a deceased donor. This case, which occurred in Brazil, raised questions about how viable the uterus might be in a prolonged state of ischemia.
Other potential limitations include cost and accessibility. Still, uterus transplant is an alternative to adoption and surrogacy for patients who have uterine-factor infertility, and has been explored as an option for transgender women.
“The desire for parenthood, to ultimately conceive, carry, and give birth to one’s own biological child, is incredibly strong for many women,” said Amanda Fader, MD, vice chair of gynecologic surgical operations at Johns Hopkins. “But those without a uterus are unable to experience this.”
Fader said that uterus transplant may not be a life-saving procedure, but “it is remarkable in that it is the only form of organ transplant that is life-generating and gives select women the opportunity to potentially experience pregnancy and childbirth.”
Ideal candidates for uterus transplant, Fader added, are of reproductive age, have been diagnosed with uterine-factor infertility, are non-smokers, are in a supportive and stable relationship, and have frozen embryos stored prior to transplantation.
Richard Redett, MD, director of plastic and reconstructive surgery at Johns Hopkins, said that while the institution has experience with vascular composite allograft transplants — those of non-solid organs like hands, faces, or penises — uterus transplants are still experimental.
“It takes a lot of resources to do this,” Redett said in an interview. “I feel very strongly that these complicated, rare types of transplants should be done in limited settings.”
Because a uterus transplant entails three major surgeries — the transplant, a C-section delivery, and the explant — there are normal surgical risks of bleeding, infection, and organ injury. In addition, transplant patients are required to take immunosuppressant medication so they don’t reject their new uterus. Short-term use of these medications is less risky; however most centers recommend just one to two pregnancies to limit the time a patient is exposed.
“This is still a very new field,” said Liza Johannesson, MD, PhD, an ob/gyn at Baylor who oversees the uterus transplant program. Johannesson, who was a part of the team who delivered the first baby from a uterus transplant in Sweden, emphasized that there is still a need for research. Not research around the safety of the procedure itself, but rather studies around immunology, ideal donors, and the quality of organs used in transplantation.
While she said it is positive to see the procedure becoming available at other centers, Johannesson said getting insurance to cover the surgery is an additional obstacle. Medical ethicists have estimated that a transplant could cost patients up to $100,000.
Nevertheless, Johannesson hopes that more patients with uterine-factor infertility become aware of this procedure. “My biggest wish is that they know that this is an option, so they don’t feel locked in to either being childless, or adoption, or surrogacy,” she said.
Edwards acknowledged that uterus transplantation is a major commitment. But she still encourages other women to consider it if they want to experience a pregnancy. “The fact that I did it really healed me, as someone who was born without [a uterus],” she said.