Christine Gossett was 14 years old when she was told that she did not have a uterus. “When I got that diagnosis, it was devastating news for a teenage girl,” she remembers. “It’s traumatizing to hear there’s no hope for you, that you’re not ever going to be able to become pregnant.”
Like Christine, Amanda Gruendell was just 16 when she learned that she had been born without a uterus. She vividly remembers being told by her doctor that transplant would never be an option in her lifetime.
As teenagers, both women knew that they wanted to have children and despite these devastating diagnoses, neither of them gave up that hope. Now, both women have received uterine transplants and given birth – Christine is mother to a 19-month-old boy and Amanda has a 16-month-old daughter. They are among a total of 36 uterine transplant recipients in the entire United States – a rare group within the already relatively small community of organ transplantation. It’s such a selective and tightly-knit world, that both women know their spot on the list of uterine transplants – Christine is the 32nd recipient and Amanda the 34th. For them, the possibility of a uterine transplant was a life-changing, and life-creating, gift. In Amanda’s words, it was “a dream come true.” But the journey for Amanda and Christine to this dream was a long one.
Before enrolling in the uterine transplant study at the Cleveland Clinic, Amanda had researched other options for becoming a parent, including surrogacy and adoption. But amid a number of significant life changes, Amanda decided to pause her plans. It was during this halt in October of 2014 that she learned about the first baby born to a mother who was part of a cutting-edge uterine transplant trial in Sweden. For Amanda, the news gave her a renewed sense of hope—hope that the treatment would come to the United States and that she would be able to realize her dream, held since before her diagnosis as a teenager, of becoming a mother.
Not long after, US trials for uterine transplants began. At the time, Amanda was single, but she knew that she was ready to parent by herself. Her only hesitation was that she wouldn’t be accepted into the clinical trial.
“I had this friend,” she recalls, “who just pushed me and pushed me until I finally applied.”
They called her very quickly and Amanda became one of the first original US candidates in 2016.
“I came out here for phase one and phase two, which were all of the physical exams, the meetings with doctors, and the psychological evaluations,” she says. “And I was approved to start IVF.”
But unfortunately, the very first uterine recipient in the study lost her uterus because of an infection and the study was paused while the medical teams researched to determine the cause. During this pause in the study, Amanda married her “ lifelong guy best friend” John and welcomed his two grown sons into her life as well. Both of her stepsons have been supportive of Amanda throughout this journey, something she and her husband are immensely grateful for.
In the Fall of 2017, the trial restarted and Amanda came back to Cleveland where she had to redo phases one and two again. She was reapproved, but it wasn’t until 2018 that she could begin the IVF treatments. Because of her rare blood type, Amanda was listed for nearly two years before a match was found in early 2020.
“I was supposed to go home six weeks after the surgery, but because of COVID the Cleveland Clinic asked me to stay here,” she remembers. “I was so immune compromised that they just did not want me to go home for a while.”
Like Amanda, Christine had learned about the uterine transplants being performed in Europe and had begun looking into trials in the United States. She applied to several studies, but she felt the one at the Cleveland Clinic was the best fit. Unlike other trials, this one did not require participants to relocate. Christine and her fellow participants were only required to come to Cleveland as needed for treatment and check-ins. With a home and family in Arkansas, the Clinic’s program was the option that would cause less disruption in her life during a journey that was already full of ups and downs.
“I was scared about leaving home behind for extended periods of time. And nervous of course. It was very, very hard to leave my family for any length of time,” Christine says. “But you know, despite all of that it was a dream come true. I was excited.”
With the loving support of Jamey, her husband of 20 years, Christine applied for the trial and she was quickly notified that she was selected to join the Cleveland Clinic trials and underwent the same evaluations that Amanda did to make sure that she could handle the physical and emotional strains of the trial. In a matter of months, she had undergone the egg retrieval procedure and by the summer of 2019, after waiting for 11 months, she received her uterine transplant. And in early 2021 she welcomed her baby boy into the family.
“I just knew inside of me that it was going to happen for me – even at 14 I knew it was going to happen.”
Early in the study Amanda learned about Transplant House from her social worker. She and her husband toured the campus, but it was such a long time between their tour and when she had the transplant, that when they returned a lot had changed – including the location of the House office.
“When we toured the office was in Building 1, so when I had my transplant and my husband came here to check in he went to someone else’s apartment.”
Arriving directly from the ICU following his wife’s 14-hour surgery and loaded down with all their luggage, John met House guest Melda who, as Amanda says with warmth, took him “under her wing” and helped him to find the office and get some food. This initial moment of caring welcome symbolizes for Amanda what defines the Transplant House experience.
“The community here is what is amazing. It was so impactful for me to come to the community dinners and meet people who were both recipients and those who were very sick and still waiting to be called. It put everything in perspective for me.”
For Amanda and Christine their transplant journey is very different from those of most of our guests. They begin the process healthy, but after the procedure they felt, as Christine says, “the worst you’ve ever felt.” And for many of their peers in the trials, they can have a reoccurring feeling of questioning why they elected to go through this procedure. Meeting other guests and caregivers gave both women a sense of what transplant is like for those seeking a second chance at life – a set of experiences that they value learning about and are grateful for the perspective it gives them about the challenges unique to their own transplant journeys.
There have been plenty of other rewarding experiences during their stays here. Particularly memorable for Amanda was meeting Candice Monroe, Board Member and longtime volunteer and advocate.
“It was one of her transplant anniversaries when I was here,” she says, “and she sat and shared with me about her experience. At the time I thought you couldn’t write your donor until a year or more after transplant, but she explained to me that you could write sooner and she helped me outline what that might look like for me. I wanted to do that because I wanted to share a little bit about the pregnancy with them so that they would know that what they did, what they chose, and what their family chose gave to me.”
Since their first stay, Amanda and John always come back to Transplant House when she needs a checkup. But what has been most special about these returns to the House is sharing the space with their daughter, Grace.
“I can’t even tell you what it was like to bring my baby here for the first time, this is just such a place of remembrance of all it took to get her here. And now she’s here and she gets to run around and play drums on the little nightstand by the bed.”
Christine feels something similar about bringing her son back.
“I love being able to walk my little boy around to all the places that we went through on the journey to get him here. I looked and looked for places to stay and I really don’t know how I could’ve done it if I had to stay someplace else. It’s affordable and it’s more like a home. It’s not a temporary stay place that makes you feel like you’re away from home. It feels like a home-away-from-home here and it’s been amazing for us.”
Amanda and Christine were both back at Transplant House recently. Amanda was here to begin the process of a second IVF transfer and, she hopes, the start of a new pregnancy. Christine was here to welcome her second baby, a little girl, into the world. Both offered advice and encouragement to women who are considering, or just starting out on, a similar journey.
“At the beginning a lot of women wonder if it’s the right thing to do – it’s a hard journey to recovery,” Christine says. “Just focus on the end goal and hang in there because it’s worth it. Even in the worst-case scenario, when you aren’t able to have a baby after the transplant, know that you’re helping other young girls that are going through the same struggles that you went through. It’s worth it. Hang in there. You’re gonna make it.”
“It’s a whole other journey,” Amanda adds. “Most people who go through infertility, that’s the hardest journey of their life. And for those who go through a transplant that’s one of their hardest life journeys. And so when you add these life-changing things together – not to mention that women are just expected to go through pregnancy like it’s no big deal – it’s hard. But it’s completely worth it when that baby is in your arms, no matter how that baby gets there. Like Christine says, find the thing that is bigger than yourself in this, whether it’s helping other young girls or being able to share your story and inspire others, or being quieter, but knowing what you’re doing is going to help girls in the future.”