Chelsea Jovanovich grew up with an impossible dream: She wanted to get married, become pregnant, and build a family.
But Jovanovich, 33, was born without a uterus.
Uterine factor infertility, the diagnosis Jovanovich received at age 15, affects about 1 in 500 women who cannot become pregnant because they are born without a uterus, had to have the organ removed, or have a non-functioning uterus.
“I went my whole life thinking I wasn’t going to be able to have a baby, or carry a baby, or do those little things like pee on a stick and yell, ‘I’m pregnant!” Jovanovich said.
That all changed in February 2020 when the Montana woman received Penn Medicine’s first live-donor uterus transplant. The health system is one of a handful in the world performing the procedure with organs from live and deceased donors. About 100 women worldwide, including 32 in the United States, have had a successful uterus transplant.
But Jovanovich’s uterus transplant is unique for another reason: She and her donor, a woman from the Philadelphia area, have become friends. Though they met only months ago, both say they feel like they’ve known each other always.
Any organ transplantation is a major surgery with risks for both donor and recipient. But uterine transplant is particularly challenging because the organ has a big job ahead, if the transplant is successful, said Nawar Latif, a gynecologic oncologist and surgical director of Penn’s living donor uterus transplant program.
“How you define success is not if the organ is surviving transplant, like other transplants,” he said. “The outcome we need is to have a healthy baby at the end.”
Donor and recipient candidates must be in top physical health, have a robust support network to assist in their recovery, and be mentally prepared for the devastating possibility that, after everything, the recipient may still not be able to have a baby.
Donors undergo a 12- to 14-hour surgery, in which doctors use robotic instruments to dissect every nerve connected to the uterus, as well as the major veins and arteries. Latif spends hours studying scans of the donor’s body in advance, to understand her unique anatomy and increase the likelihood of successfully removing the uterus without complications, such as blood clots that can occur when disconnecting veins and arteries.
Transplanting the uterus into the recipient requires a long incision, from the pubic bone to the belly button, and meticulous work to ensure that tissue, blood supply, and nerves are well-connected. Doctors closely monitor transplant recipients for signs of organ rejection for about six weeks; full recovery takes as long as six months.
If after six months the transplanted uterus is functioning well, the patient can move forward with implanting an embryo. The fallopian tubes, which carry eggs from the ovaries, are not part of the uterus transplant, so a natural pregnancy is not possible.
Doctors are hopeful that the procedure will become more widely available as an alternative to surrogacy and adoption. More than 1,200 people have applied to Penn’s trial, though only a small fraction will be selected. So far, Penn has completed two deceased-donor transplants and one live-donor transplant.
“Before, the options were surrogacy or adoption, and for those women who want to have the feeling of being pregnant and having their own baby ... this is important for having a choice and the ability to do what they want,” Latif said.
But even then, the high cost could be a barrier to all but the most affluent prospective parents, said Kathleen O’Neill, an obstetric endocrinologist who leads Penn’s uterus transplant program. She estimates that uterus transplant would cost about $250,000 — a price patients would likely have to pay out of pocket, because even more widely available fertility treatments, such as in vitro fertilization, are often not covered by insurance, O’Neill said.
“People of all levels of income want to expand their families. The fact that you have to have financial means if you don’t have insurance coverage — even if you do have insurance — is wrong,” she said.
Clinical trial patients still experience out-of-pocket costs for IVF and any prenatal care not covered by insurance, but patients are not responsible for any medical services specific to the transplant procedure.
Jovanovich felt beyond lucky when she got a call from Penn asking her to come to Philadelphia for interviews and medical exams in November 2019 for a clinical trial, which would not carry that price tag.
She had applied as a last-chance shot at a baby of her own, after years-long plans for a gestational carrier fell through.
A month later, the doctors called back to say that not only had she been accepted to the program, but that they’d also found the perfect donor.
When Cheryl Cichonski-Urban, 42, of Langhorne, saw a television news segment about Penn’s uterus transplant program, she knew instantly that she was going to be a donor, she said.
“I genuinely loved being pregnant. I loved the feeling. It was a real bonding experience for me,” said Cichonski-Urban, who has an 11-year-old daughter and 10-year-old son. “I felt like if I can give somebody else that opportunity, I would love to.”
She thinks her interest in medicine — she studied to be a nurse but ended up in financial services — predisposed her to want to help others.
Cichonski-Urban knew that she might never meet the recipient of her uterus and that the procedure might not even be successful. She was OK with that, but when she woke up from the surgery on Feb. 21, 2020, Cichonski-Urban knew she would still share a lifelong connection with the women who got her uterus.
“The one thing I vaguely remember [after surgery] is begging them to tell me if it worked. Did they get it? When they said it worked, it was implanted ... I still get goosebumps,” she said. “I felt an instant bond. I didn’t know Chelsea, but I felt a connection.”
Meanwhile, Jovanovich and her husband had scrambled to rent out the house they’d just bought in Montana and figure out how they’d manage their new accounting business long-distance in order to move to Philadelphia three days before the surgery. The couple will need to stay in the area until Jovanovich is done having children, at which point the uterus will be removed, so that she does not have to continue taking anti-rejection medication.
Although the procedure went well, she miscarried the first embryo doctors implanted in August. They tried again in October and this time, it worked.
Alone in a city where she knew no one, in the middle of a global pandemic, her getting to know Cichonski-Urban was about more than feeding her curiosity.
Under the trial’s protocol the women had to wait six months to contact each other and only then through social workers.
Organ transplants are always done without revealing patient identities, in order to protect the patients’ privacy. A slow introduction is important for patients who decide to connect after the procedure, especially when organs come from deceased donors whose family members may not be ready, said Lara Moretti, family support services manager for Gift of Life, which coordinates deceased donor organ transplants in the Philadelphia area.
Altruistic live donations, such as Cichonski-Urban’s, are uncommon — live donations more often come from a friend or family member, or through an organ swap program, which is when someone who needs an organ is able to get one because a family member or friend donates to another person in need. About 85% of organ transplants are from deceased donors, according to data from the federal Organ Procurement and Transplantation Network.
“There’s so much emotion attached to donation, especially for families who had a relative die, but also for recipients,” Moretti said. “There’s so much physical and emotional healing that happens in that first year.”
Ultimately, many donors and recipients do connect and are glad they did, she said.
Once Cichonski-Urban and Jovanovich were able to communicate directly, through email, they couldn’t stop. They found they had a lot in common, similar family values and personalities.
Finally, in late May, more than a year after the surgery, they met. Jovanovich invited Cichonski-Urban to be part of her maternity photoshoot on Penn’s campus.
Though they were meeting for the first time, “I felt like I’d known her my entire life,” Jovanovich said. “I have a piece of her inside of me. Yes, we’re strangers, but it definitely does not feel like we’re strangers.”
Cichonski-Urban said when she “saw the bump ... that’s when it really hit me. We just hugged each other and cried and I didn’t want the moment to stop.”
Jovanovich’s son, Telden, was born a week later in Philadelphia, on May 25. Cichonski-Urban and her entire family — including her own parents and siblings — have met the baby.
Telden recently traveled with his parents to Montana, where he will grow up, but for now, Philadelphia is home.
The couple plan to stay in the area for a while longer, while they try for a second baby with their last embryo. This time, they’re not alone — she and Cichonski-Urban talk and text constantly.
“We’re all family now,” she said.
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