PHILADELPHIA – The birth of Benjamin Thomas Gobrecht defied both expectation and imagination: his mother, 33-year-old Jennifer Gobrecht, was born without a uterus. Benjamin, who arrived in November 2019 at the Hospital of the University of Pennsylvania, grew inside a womb Jennifer received as part of an organ transplant research trial over a year earlier. Benjamin is the first baby born as part of Penn Medicine’s ongoing Uterus Transplantation for Uterine Factor Infertility (UNTIL) trial, which launched in 2017. He is the second baby in the nation to be born following transplantation of a uterus from a deceased donor. The UNTIL trial is currently the only U.S. uterus transplant trial that is actively enrolling patients.
“One of the hardest days of my life was when I was 17 years old and learned I would never be able to carry my own child. My husband and I have always wanted to grow our family, but we knew the limited options meant it might never happen,” said Jennifer Gobrecht, who lives just outside of Philadelphia with her husband, Drew. “And now here we are, in spite of everything, holding our beautiful baby boy. Benjamin is a perfect miracle. It’s all thanks to a truly incredible team of doctors and nurses and the selfless donor who made my dream of motherhood come true. When I signed up for this trial, I hoped it would help my husband and me start a family, but I also strongly believe in helping others. My hope is that through this research, others with similar struggles will have the same opportunity.”
Gobrecht was born with a congenital condition called Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, which means she has functional ovaries but does not have a fully formed uterus. MRKH affects approximately 1 out of every 4,500 females, and makes it impossible for women to get pregnant or carry a child. It’s one example of Uterine Factor Infertility (UFI), which is a previously irreversible form of female infertility that affects as many as five percent of reproductive-aged women worldwide. A person with UFI cannot carry a pregnancy either because she was born without a uterus, has had the organ surgically removed, or has a uterus that does not function properly.
“For women with Uterine Factor Infertility, uterus transplantation is potentially a new path to parenthood — outside of adoption and use of a gestational carrier — and it’s the only option which allows these women to carry and deliver their babies,” said Kathleen O’Neill, MD, MTR, an assistant professor of Obstetrics and Gynecology in the Perelman School of Medicine at the University of Pennsylvania, and co-principal investigator of the UNTIL trial. “While there are still many unknowns about uterus transplantation, we know now — as evidenced by Jen and baby Benjamin — that this is potentially a viable option for some women. Our collaboration with investigators at partnering institutions as well as with Jen and other brave patient pioneers in these clinical trials are helping us learn more about how to make uterus transplants safer, more effective, and available to more women.”
Most of the other programs around the globe have focused on transplantation exclusively from living donors, and to date, there have been approximately 70 uterus transplants globally. However, Penn Medicine’s trial is one of few to explore donation from both living or deceased donors — an approach which has the potential to expand the pool of organs available for donation and allows investigators the opportunity to directly compare outcomes from the different types of donors.
The Gobrechts welcomed their son via cesarean section, attended to by a team of more than 20 specialists in high risk obstetrics, transplant surgery, fertility, gynecologic surgery, neonatology, pediatrics, urology, nursing, and anesthesiology.
The couple’s journey began more than two years ago, with an extensive evaluation by the clinical trial team including specialists in clinical research, bioethics, social work, psychology, pathology, obstetrics and gynecology, transplant, and infectious disease, among others, before Jennifer was enrolled in the trial. The couple had already undergone in vitro fertilization (IVF) while exploring the option of a gestational carrier and had cryopreserved embryos available for transfer into Jen’s new uterus following successful transplant surgery.
The uterus transplantation done as part of this clinical trial is a complex investigational procedure that involves both surgical and medical management. More than 35 health care providers and clinical investigators are involved in each trial participant’s care over the course of a five- to 10-year research period, which spans IVF, transplantation and birth, to long term follow-up after delivery and after the surgical removal of the organ after delivery. In addition to women with UFI seeking the opportunity to participate in the clinical trial, more than 70 women have expressed interest in donating their uterus so women with UFI may experience childbearing as they did.
“The Penn Transplant Institute has been innovating in the field of transplantation for decades, and the team’s diverse experience now enters into the field of uterus transplantation. While this milestone comes early on in our clinical trial, we remain optimistic about what’s to come. We hope to one day expand the benefits of transplantation to serve more patients, not only as a way to save lives, but to enhance, and even create them,” said Paige Porrett, MD, PhD, an assistant professor of Transplant Surgery, and co-principal investigator on the UNTIL trial. “In addition to providing families like the Gobrechts with a new way to expand their family, the research implications for this trial hold great promise. This clinical trial is an outstanding and unique research opportunity to learn more about how pregnancy and transplantation work, and we are investigating many important research questions in these arenas.”
The UNTIL trial thus hopes to address a wide array of important biologic questions that persist in organ transplantation, female reproductive biology, and pregnancy. The trial’s design, for example, gives researchers the ability to study women throughout pregnancy, not only ensuring the safety of mother and baby throughout their participation in the trial, but also allowing researchers to uncover new information about how cells from different individuals interact and impact pregnancy and even alter the maternal and fetal immune system. Researchers note this effort may help fill many of the knowledge gaps that affect women’s health overall, as much of the knowledge gained by this trial may be applicable to all women, including women who do not undergo uterus transplantation.
The Penn Medicine team caring for Jennifer worked closely with their partners at the Gift of Life Donor Program, to perform the 10-hour uterus transplant procedure using a uterus from a deceased donor in 2018.
“Gift of Life Donor Program was pleased to coordinate the donation for the UNTIL Trial with our partners at Penn Medicine that resulted in the birth of baby Benjamin. We look forward to working with Penn Medicine on future uterine transplant trials to support the advancement of this innovative area of donation and medical transplantation,” said Richard D. Hasz, MFS, CPTC, vice president of Clinical Services, Gift of Life Donor Program. “We extend our deep appreciation to the selfless donor and her family for their role in saving three lives through organ donation and helping to bring new life into this world through uterine donation. Congratulations to Penn’s talented medical team and to the Gobrecht family.”
“Our family is extremely proud to support transplantation that will enable more women to experience the joy of childbirth. My daughter was the best mother I ever knew; nothing was more important to her than her children. What a beautiful and fitting legacy for her to help give the gift of motherhood to another woman,” said the mother of the donor. “Our hearts and prayers go out to my daughter’s recipients and their families.”
To learn more about the UNTIL trial, visit https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/transplant-institute/uterus-transplant.
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