Emily Boydston, RN, has truly unique insight into being a dedicated uterus transplant coordinator – she’s the only one in the United States so far. It’s been a big year for her and her patients, given that the uterus transplant program at the UAB Comprehensive Transplant Institute (CTI) recently delivered its first baby born from a uterus transplant pregnancy outside of a clinical trial.
“As the transplant coordinator, I am a constant resource and advisor to patients from the time they enter the program until after recovering from birth,” Boydston said. “It’s a long process, and my patients work with a large team of specialists, so they depend on me to always look ahead and stay engaged on their behalf.”
Transplant coordinators are specially trained nurses or other medical professionals who guide patients through the transplant process, including preparing them for visits with various specialists, sharing guidelines and information between appointments, and generally serving as a link to the care they receive during each step. In short, they help women with uterine factor infertility realize their hopes of pregnancy.
Uterine factor infertility (UFI) is a condition in which a woman cannot achieve pregnancy because she was born without a uterus, had it surgically removed during a hysterectomy, or has a uterus that does not function properly. The condition is estimated to affect as many as 5% of childbearing-aged women worldwide and once was an irreversible form of female infertility. A uterus transplant is the first option for women with absolute UFI (those without a uterus) to carry a child themselves. So far, UAB has performed five uterus transplants, and two of those women have given birth at the time of this article.
A long process
The uterus transplant process begins months before the woman is placed on a transplant waitlist and extends beyond birth. It requires extensive day-to-day involvement from the transplant coordinator, who is responsible for guiding patients through every stage of the process. The entire process can take 2-5 years and includes:
- Physical and psychological evaluations for candidates
- Creating an embryo
- Being placed on the waitlist for a donor uterus
- The transplant procedure itself, then six months of follow-up care prior to embryo transfer
- Taking immunosuppressive drugs, which increase the chances for a successful transplant
- Implantation of the embryo
- Pregnancy
- C-section birth, combined with uterus removal (if the woman doesn’t want more children)
- Monitoring during recovery
- A registered nurse for 13 years, Boydston spent five years as a lung transplant coordinator at the UAB CTI prior to joining the uterus transplant program in 2020. She learned about the newly created program during a presentation by Paige Porrett, M.D., Ph.D., the inaugural director for Vascularized Composite Allotransplantation at the UAB CTI.
“This is a cutting-edge procedure that these women don’t have to get – they are bravely choosing this childbearing experience, so they are unique among transplant patients,” Boydston said. “Dr. Porrett conveyed that it was going to be emotionally involving and uniquely rewarding, which has been true to my experience.”
Dr. Porrett understands that there are inherent challenges in being a uterus transplant coordinator. “A uterine transplant pregnancy involves so many departments – Surgery, Obstetrics & Gynecology, Radiology, Pathology, Medicine, Anesthesiology, and Pediatrics – and dozens of physicians,” Dr. Porrett said. “What’s more, the perspective of uterine transplant patients is unique. They are intensely monitored and really have to change their lives for the process. So, it takes a special skill set for Emily’s role. She has both the broad clinical understanding of what we are doing and the emotional intelligence to keep patients on track.”
Wide range of responsibilities
Once uterus transplant candidates complete a screening form, Boydston enters the picture by reviewing their medical records. Prior to the patient being placed on the transplant waitlist, she makes sure that the woman has been to an in vitro fertilization (IVF) clinic to have multiple embryos created. “We review the entire plan together, and I prepare them for a two- or three-year marathon,” Boydston said.
Patients often spend many months on the waitlist, during which time they speak with Boydston at least monthly, and she helps them stay ready and comply with requirements. Patients undergo blood work every 3-4 months and must notify Boydston of any travel plans, illnesses, or other circumstances that might affect their ability to receive an available donor uterus.
Uterus transplant patients at UAB are required to live in the Birmingham area from transplantation until after delivery, because there are so many elements of care to manage. “After the transplant, we’ll talk almost every day, and they will get lab work done almost every week,” Boydston said.
For six months, patients are given immunosuppressive medications to help ensure that their bodies don’t reject the transplanted uterus. During this time, Boydston attends monthly cervical biopsies and keeps patients connected with Nutrition Services, Pharmacy, Billing, and social workers as needed. She attends every clinic visit for each patient. Along with clinical support, patients also lean on Boydston for advice about the Birmingham area, to help them establish a comfortable everyday life here.
‘We are in this together’
Boydston is with the patient for embryo transfer, and she continues helping patients understand their medications and reviews lab results during pregnancy. Birth is not the end of her responsibilities. Because patients undergo a C-section and possibly a hysterectomy, they receive special monitoring afterward. “They are my patients until they are off all medications and cleared by surgery,” she said.
Boydston’s role has special challenges because of the varying complexity and timeline for each patient. Beyond that, patients and their families are proactive, curious, and engaging, so they tend to have a lot of questions. Boydston believes her special training is helpful in this role, but she also recognizes the importance of her interpersonal skills.
“If you aren’t ready to get invested in each family’s passion for this process, it’s not for you,” Boydston said. “Beginning with their reasoning and decision to try to carry their own child, we are in this together. It’s such a joy to see that vision through with the family. After the first successful delivery at UAB, my patient had her baby in her arms when I came in to see her. We looked at each other and cried about three years’ worth of built-up tears.”
Click here to learn more about uterus transplantation at UAB Medicine.