‘It’s important to feel that bond’
Woman shares what it’s like to give birth with a transplanted uterus
ATexas woman who learned as a teen that she would be unable to bear children has given birth to a healthy baby girl, thanks to an experimental procedure at Baylor University Medical Center.
The woman is the second Baylor patient to give birth after receiving a uterine transplant from a living donor. She is the first to share her story publicly.
Baylor, which is a part of Baylor Scott & White Health, is the first hospital in the U.S. and the second in the world to successfully perform the procedure, which is intended for women who were born without a functioning uterus or who lost their uterus to surgery or trauma. The patients’ only other options for having children are surrogacy or adoption.
“It’s important to carry your own child and to feel that bond that you have when she’s in your stomach,” said the patient in an exclusive interview with The Dallas Morning News. She requested anonymity to protect her family’s privacy.
Surgeons at Baylor have conducted eight uterine transplants — two from deceased and six from live donors — since launching their clinical trial in 2016. Of those eight patients, four suffered complications that required surgeons to remove their uteruses.
Some medical experts have questioned Baylor’s decision to devote significant resources to a problem that is not life-threatening and affects relatively few women. But Baylor argues that the condition is a congenital malformation and requires treatment because it has profound effects on a woman’s health and well-being, as well as that of her partner.
Two women have delivered babies — the first, a baby boy, arrived in November. Two other women are undergoing embryo transfer procedures follow-
ing in vitro fertilization, or IVF. The hospital plans to perform two more uterine transplants before reviewing results and working to raise money for a second trial.
The new mother, who gave birth to a 6-pound, 7-ounce baby girl in February, said the road to the transplant was filled with emotional ups and downs.
When she was 14, the woman noticed she was the only one among her friends who had not yet started to menstruate.
She visited the doctor with her mother. Scans and tests turned up a startling diagnosis: She had been born with ovaries but no uterus or cervix, a condition that affects around 1 in 5,000 women. A specialist told her she would never be able to carry her own child.
The pain of that discovery settled in slowly. “You don’t really have all of the emotions at that age, because you’re not able to have a child yet,” she said. “But once you get married, then you realize how heartbreaking it is to get the news.”
When she met her husband, she told him early in their relationship about her condition. He assured her they would find a way to have children no matter what it took.
While living overseas with her husband, who serves in the military, she read about uterine transplant clinical trials in Sweden, where the procedure was performed successfully for the first time. Then, in early 2016, she learned from her mother, who lives in Texas, that Baylor was starting a clinical trial of its own, with help from the Swedish doctors. She became one of the first patients to enroll.
Despite the surgical risks and unknown outcome, she and her husband called the decision to participate a “no-brainer.”
“My thought on it was, even if the transplant is not successful,” she said, “I still would have had some satisfaction in that I helped doctors learn what to do and what not to do for the next person who has a transplant.”
In December 2016, Baylor surgeons removed a healthy uterus from a live donor in a five-hour procedure similar to a hysterectomy. Baylor would say only that it was a woman who had already had children and wished to help another woman start her own family.
Surgeons cooled and flushed the fist-sized organ and implanted it into the recipient, who had been wheeled into an operating room next door.
They connected the patient’s blood supply with the uterus’ vessels and arteries and watched as the organ turned from beige to pink.
After about five more hours, the patient awoke and said the procedure was less painful than she had imagined.
The first sign that the transplant was working properly came one month later, when she got her period for the first time. “I remember telling her, ‘I bet you no one else is this happy to have their first cycle,’ ” said her husband.
She found herself researching periods to make sure everything she was experiencing looked normal, although she felt odd looking up information about periods at her age.
After she started menstruating, doctors transferred an embryo to her uterus. Before being admitted to the clinical trial, each couple had to go through IVF to make sure they could conceive a child. (IVF is necessary because the transplant recipients don’t have fallopian tubes that allow eggs to travel from the ovaries to the uterus.) Then they froze their embryos.
The day she learned she was pregnant, she and her husband celebrated and cried together. Even after receiving the good news from her doctor by phone, she took a home pregnancy test so she could experience that milestone for herself. “I wanted to have that same feeling that any normal woman would have,” she said.
Her pregnancy went smoothly, despite the fact that she had to take immunosuppressants to prevent her body from rejecting the uterus. Doctors monitored her for signs of rejection, infection and other problems by taking regular cervical biopsies.
Although the uterus’ nerves are not connected to the mother’s nerves during surgery, she could feel the baby kick and move inside her belly. She could not feel the pain of contractions, however, which required doctors to watch her closely for signs of early labor.
Doctors delivered her daughter by C-section to a room full of overjoyed people in blue hospital gowns and masks. The parents felt a mix of anxiety and excitement. Now that they and the baby are out of the hospital, they have assumed a routine of feeding, changing diapers and barely sleeping.
Patients in the trial can bear up to two children with the donated organ before it is removed. The mother would not say whether her donated uterus was removed.
The birth of a second baby after a uterine transplant “is proof that this was not a clinical stunt,” said Dr. Giuliano Testa, a Baylor transplant surgeon and principal investigator of the trial. “We want to make this a reality for all the women who have this kind of problem, and we believe even more that this is the right way forward.”