‘My journey ends’: Without IVF, this Alabama uterine transplant patient loses her hope for a second baby

By CNN

Published March 2, 2024 7:42 AM

CNN

By Amanda Musa and Isabel Rosales, CNN

(CNN) — Time is running out for Elizabeth Goldman to have one more baby with the uterus she received in a transplant two years ago. Her IVF treatments were halted after a state Supreme Court ruling last month, and it’s a delay she says her family can’t afford.

When she was 14, she was told that she had been born without a uterus and that she would never get pregnant.

“I was told that it would basically be impossible,” said Goldman, who has a condition called Mayer-Rokitansky-Küster-Hauser syndrome that affects the reproductive system. “I always dreamed of carrying my own baby, so I was completely heartbroken.”

Years later, when Goldman married her husband, Timmy, she was convinced she would never be able to carry his baby.

But everything changed in 2020, when the couple learned about the University of Alabama at Birmingham’s uterus transplant program.

They sold their home in Mobile and moved to Birmingham to enroll in the program in April 2021 in the hopes of starting a family.

“We moved to a whole new city where we basically knew no one and really started from scratch to chase this dream,” she said.

Goldman underwent the IVF process, which involves extracting eggs from a woman’s ovaries and fertilizing them in a laboratory to create embryos that can then be transferred to a uterus and hopefully result in a pregnancy.

After IVF, Goldman received her transplant, becoming the 36th woman in the United States to receive a donated uterus, in 2022 before giving birth to her daughter, Zari Grace, in October 2023.

“She is my biggest dream come true,” she said.

Goldman, 32, and her husband want to give their daughter a sibling, but their plan has been put on hold due to the Alabama Supreme Court ruling that decided frozen embryos are children under the state’s Wrongful Death of a Minor law.

The ruling led some fertility clinics in Alabama to pause their services, including UAB, where Goldman’s remaining embryos are stored.

This freeze means Goldman cannot move forward with an embryo transfer, leaving her in limbo and at risk of medical complications.

This may be her only chance to have another baby, she says.

“The reality is, without doing another embryo transfer, without doing IVF, without having access to it, my journey ends,” Goldman said.

‘On a tight timeline’

Goldman has only so much time before she can have another baby, according to Dr. Kathleen O’Neill, an assistant professor of obstetrics and gynecology and medical director of the uterus transplant program at the University of Pennsylvania.

O’Neill does not treat Goldman but has been involved in six uterus transplants at Penn.

“A uterus transplant is unlike any other organ transplant in that it’s temporary,” she said. “The uterus is in place really just until the woman has completed their childbearing.”

In general, patients are allotted two live births from the transplanted uterus before it is removed via hysterectomy, according to O’Neill. After delivering their first baby, women typically take six months to recover before trying for a second pregnancy.

The goal is to produce two healthy babies in the shortest possible timeframe before removing the uterus, O’Neill says.

“It’s important that we take the uterus out because these women are on medications that prevent their body from rejecting the organ,” she said.

The immunosuppressant drugs needed to maintain this kind of transplant can have short- and long-term effects on the kidneys and other organ systems.

“Delays can be harmful to the patient,” O’Neill said. “There is a timeline, and a lot of that is going to depend on the individual patient and how [they] are tolerating the medications.”

Goldman says she has diagnostic testing at least twice a month to make sure her kidney levels are normal. She also has a monthly cervical biopsy to test for rejection.

Right now, her plan is to continue maintaining the transplanted uterus for as long as she is healthy, but that can change at any moment, she says. And removing the uterus would shatter her dream of becoming a mother of two.

“Once I have the hysterectomy, I lose the opportunity forever,” Goldman said. “I won’t be able to have another uterus transplant.”

‘A life-giving transplant’

A uterus transplant is an elective procedure often undergone in women with a condition called uterine factor infertility who want to carry and deliver their own baby but cannot get pregnant.

These women typically have a uterus that does not function properly, or they may have had it surgically removed in a hysterectomy.

Like Goldman, some women are born without the organ altogether. Overall, uterine factor infertility affects as many as 5% of women worldwide, according to UAB Medicine.

“With uterus transplant, it’s not a lifesaving transplant but a life-giving transplant,” Goldman said.

The world’s first baby from a transplanted uterus was born at the University of Gothenburg in Sweden in 2014.

About 100 uterus transplants have been performed worldwide, according to UAB Medicine.

O’Neill says pregnancy involving a uterus transplant involves several steps.

“They have their transplant, and three to 12 months after their transplant, they start having attempts at pregnancy with embryo transfer,” she said. “They hopefully make it to around 37 or 38 weeks of pregnancy, and then we deliver them.”

These pregnancies are treated as high-risk, and the babies are delivered via Cesarean section because women with uterine factor infertility cannot deliver vaginally, according to O’Neill.

Despite the potential for complications, many patients prefer uterus transplant over surrogacy or adoption.

“Some people just might not understand the desire to carry your own baby and give birth to your own child,” O’Neill said.

There can also be stigma and shame around being born without a uterus, she adds, so being able to carry their own baby is especially gratifying for some women.

Because Goldman was enrolled in a trial, UAB Medicine’s program covered the cost of her uterus transplant, but she and her husband paid for the IVF they needed for a pregnancy to occur.

The couple spent about $60,000 on three rounds of IVF, which still costs less than surrogacy, according to O’Neill.

“The cost of a gestational carrier to carry a pregnancy and have a live birth is somewhere in the ballpark of $90,000 to $150,000,” O’Neill said.

Unintended consequences

There are four active uterus transplant programs in the United States: at the University of Pennsylvania, the Cleveland Clinic, Baylor University Medical Center and the University of Alabama at Birmingham.

“The fact that this happened in Alabama is just really so unlucky,” O’Neill said. “It’s so incredibly unfortunate, because it really leaves these patients in a very bad spot.”

Health officials agree that the consequences of the Alabama decision are only just beginning to be felt.

“I have found, when speaking with legislators, that they don’t really understand the science,” Dr. Eve Feinberg, an associate professor of obstetrics and gynecology at Northwestern University’s Feinberg School of Medicine, previously told CNN.

“And I think that in the Alabama case, they probably didn’t quite understand the implications of what their ruling is now going to do for those families that so desperately want children.”

The court’s February 16 decision rested in part on the belief that “life begins at fertilization,” Justice Jay Mitchell wrote in the majority opinion.

“It’s hard to say that every embryo is going to be a baby,” Goldman adds. “We transferred a perfect-quality embryo on embryo transfer number one, and it didn’t result in a baby.”

Goldman says some lawmakers ultimately do not understand what IVF means.

“Unless you live that journey and have to go through it, it’s hard to understand exactly what it looks like and what it feels like,” she said. “It’s not just a physical thing. It’s not just an emotional thing or a mental thing. It’s just a combo of all of it, and it really consumes you.”

On Thursday, the Alabama House and Senate both passed bills aimed at protecting IVF.

Sponsored by Rep. Terri Collins and Sen. Tim Melson, the bills would apply retroactively and would be automatically repealed next year. Both legislators said the goal of the House bill is to get IVF clinics to reopen right away.

The bills “would provide civil and criminal immunity to persons providing goods and services related to in vitro fertilization except acts or omission that are intentional and not arising from or related to IVF services,” according to a synopsis.

Lawmakers in favor of the measures hope to have legislation prepared for Gov. Kay Ivey’s approval next week.

Goldman says she doesn’t know what she will do if her embryo transfer is not allowed to move forward soon.

Her clinic at UAB Medicine did not respond to CNN’s request for comment.

“I can’t imagine the fear and anxiety they have just to show up and do their job,” Goldman said. “Even if things went back to normal, I still think that there’s going to be fear and uncertainty for not only the providers but also the patients.”

CNN’s Mira Cheng, Jacqueline Howard and Meg Tirrell contributed to this report.

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