By 16, Michelle had never had a period so she visited an OB-GYN to learn why.
The answer was shocking: Michelle didn’t have a uterus.
While that explained why she didn’t menstruate, it also meant she’d never carry a baby. At 16, that didn’t matter so much, but as she aged and married her husband, Richard, she longed for a child.
“It became upsetting that I wouldn’t be able to carry my own child,” the 32-year-old nurse from Greenville, Pennsylvania told TODAY. “I never thought that I would see those words that you’re pregnant or even think that it would be possible for me.”
In 2016 she learned that Cleveland Clinic was transplanting deceased-donor uteruses and she applied to receive one. She never thought she’d qualify. But after a years-long process, in March she gave birth to a baby boy, the second person to undergo a uterus transplant and give birth at the Cleveland Clinic.
“It was a dream come true,” she said. “It was magical.”
Uterus transplants give women a chance to deliver a baby
About 1 in 5,000 women is born without a uterus, according to Dr. Uma Perni, a maternal-fetal medicine specialist involved in the clinical trials of uterus transplants at Cleveland Clinic. But uterine factor infertility, abnormalities of the uterus that lead to infertility, is more common, impacting 1 in 500 women.
“(Being born without a uterus) is not an everyday situation but it is not terribly uncommon,” Perni told TODAY. “There are lots of young women out there given this diagnosis of a really permanent infertility at a very young age, which is really devastating.”
Women without uteruses often have functioning ovaries, meaning they produce eggs, but can’t carry a baby. Cleveland Clinic is one of several institutions researching uterus transplantation and they use uteruses from deceased donors. The process involves microsurgery and potential recipients, like Michelle, who asked TODAY not to use her last name for privacy reasons, go through a robust screening process.
“It involves obviously a very thorough medical evaluation, just making sure that they would be a good candidate to carry a pregnancy,” Perni explained. “There's also social psychological factors at play because it really is a very long road.”
It took Michelle four years from the time she applied to when she received her transplant and then had a baby. She worried that she might be disqualified because her husband works on the road and the team was looking for someone with strong support. But the couple proved they had ample help.
Then there was the waiting. Michelle had to be ready at any moment to go to Cleveland when a uterus became available. Three times, she received a call that didn’t end with a transplant.
“I (received) several phone calls that they had a donor uterus,” she said. “Within a few hours to a few days we got the news that it wasn’t a perfect match.”
It was disappointing, yet hopeful.
“It was hard,” she said. “You’re thinking that in a few days you could be on your way to Cleveland and getting a uterus. Each time you got that phone call that gave you hope.”
Finally in January 2019, the team found a perfect match and Michelle underwent a 14-hour surgery. Two weeks after her transplant, the then 30-year-old had a first.
“It was my first period,” she said. “At first, I wasn’t sure if it was good bleeding or bad bleeding. Having a uterus could mean, ‘Yes, you’re having a period’ or ‘You might be having a rejection."
While it was “weird,” it also felt affirming.
“I felt like a woman,” Michelle said.
After six months, Michelle prepared for an embryo transfer.
“I was nervous. I didn’t know really what to expect. It could not take. Your uterus could not carry a child,” she said. “I was ready.”
Embryo transfer to birth
Six days after receiving the embryo, Michelle took a pregnancy test and saw something she thought was impossible: She was pregnant.
“It didn’t feel real,” she said.
The surreal feelings continued. Seeing the ultrasound and the baby felt like a dream. Though, the anti-rejection drugs caused her to tire easily and morning sickness plagued her pregnancy. Still, Perni said it was an average pregnancy.
“She has some hypertension that we monitored. For the most part her pregnancy went very smoothly,” Perni said. “It was really amazing how similar her pregnancy was to a normal pregnancy. You could not tell on the ultrasound that there was anything different.”
Michelle experienced bleeding behind her placenta, which could cause miscarriage. She had been taking blood thinners because she developed blood clots. But she stopped taking the thinners and doctors monitored her closely.
“I’m keeping my baby safe but potentially by being pregnant I could develop more clots,” she said. “It was scary, but I knew I was in good hands.”
In early March, she delivered Cole, a healthy baby boy at 34 weeks and six days pregnant. He weighed 5 pounds 12 ounces and only spent a few days in the neonatal intensive care unit for observation.
“I had a c-section so I was awake to see my son being born,” she said. “It didn’t seem real until he came out and cried.”
All people who receive uterus transplants need to deliver by cesarean section, Perni noted. While seeing her son was “magical” for Michelle, the doctors also felt moved by the experience.
“It's really an honor to be part of the team and to be able to share something like this with a couple," Perni said. “To know that you were a part of it in making that a possibility, it's really quite special.”
Michelle had the uterus removed, which right now is the goal for the study, Perni explained. Women can choose to have two babies with the transplanted uterus and then have a hysterectomy. This saves them from a lifetime of anti-rejection drugs.
“My kidney function levels had been a little elevated and I just didn’t feel like myself,” Michelle said. “I wanted to be healthy for my son.”