Born without a womb. Now a mom. Woman gives hope after successful uterus transplant

USA Today Lifestyle 2 months ago

Kayla Edwards first read about uterus transplants in Sweden. Born without a uterus, she considered moving there. 

Instead, she and her husband Lance Edwards left family, friends, a newly-purchased house and secure jobs in Vancouver, Wash. to move for an experimental procedure in Dallas, Texas.

It wasn't bravery. It was love, said Lance, 27.

"For Kayla to even potentially have the thought of carrying her own child — just seeing the light in her eyes," he said. "The last thing I want to do is regret not making that decision, I didn't want to think, 'Why didn’t we even try?' "

Kayla, 28, is one of 20 uterine transplants at Baylor University Medical Center . Her child is the fourth born at the hospital with the procedure and while other moms preferred anonymity, she knew she wanted to share her story.

"Hearing other people’s stories when I was first diagnosed gave me a lot of hope and I just wanted to be that person now," Kayla said.

A pregnancy of 'constant worry'

Indy Pearl Edwards was born Sept. 10, weighing 6 pounds 5 ounces. She is as peaceful a baby as can be, just as she was during Kayla's pregnancy—which when she was pregnant caused the mom-to-be concern. 

She texted three other pregnant moms with uterus transplants at Baylor. Were their babies kicking and active? Her little one was so mellow. She also had zero nausea.

"The first four months every day she was in constant worry," Lance said. "It was hard for her to get excited about it. 'She’s not moving,' " he recalled his wife saying. "Having everything go so smoothly is also a worry."

Women in the trial spend five hours on the operating table to receive a uterus, then they must receive drugs so the organ is not rejected. Once a woman recovers, doctors wait to see if a woman achieves menstruation. If the transplant is successful, women undergo in vitro fertilization within three to five months after the surgery. 

The cost to uterus donor and transplant recipient pare free as part of the trial and the cost outside of the trial is still to be determined, Baylor reports. 

But should the cost be equitable to other abdominal transplants, the price tag could reach to hundreds of thousands of dollars.

Born without a uterus 

Kayla Edwards is 1 in 4,500 women worldwide with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, a condition which causes the uterus to be underdeveloped or absent. The uterus is the organ where babies grow—the womb. Kayla, like others with MRKH, has functional ovaries, and is able to   produce eggs. When she learned this at 16, she didn't comprehend the full implications and worried more that the condition made her "weird."

Later, she worried how to tell Lance, but did so on their third date.

"He was so wonderful and just told me, 'What kind of man would I be if I walked away just because of this?' So he was the person I wanted to spend my life with." 

Lance was always Googling about how it might be possible for her to have a baby. That's how she learned in 2014 about the first medical team in Sweden to transplant uteruses into women so they could give birth. In March 2016, they learned they were accepted for the trial at the Baylor Scott & White Research Institute.

Six months later, they were on their way to Texas when they received a call. 

"It was a long journey," she recalled. "We literally got a phone call while still driving that their first couple of transplants didn't work. My (uterus) donor didn't qualify anymore and they would have to go back and figure out a new donor for me."  

'1 egg left' and 'no guarantee'

The Edwards had four fertilized embryos. The first three embryos failed.

"Like I said, it was a long journey," Kayla Edwards said. "I didn't get pregnant as easily as some other women did. We had one egg left. The doctors told me from the start there was no guarantee. But I thought at least maybe I'll be able to help others learn from this."

Kayla had blogged to share her MRKH and infertility struggles and figured although she hadn't posted in a while, she could let her community, many young women like her, know what had happened.

Finally, in January 2019, the couple found out the last embryo took and they were pregnant. 

"I didn't believe them when they told me," Kayla said. "We were crying together and we asked if they triple checked that test."

Two years after they moved to Plano, Texas, their "miracle baby" was born.

Thirty doctors and specialists were in the room "cheering and crying with us," Kayla said. 

Dr. Liza Johannesson, medical director of uterus transplantation at Baylor University Medical Center, said a birth is every bit as emotional for the medical team.

"We know them almost like friends. We know their story. We know how devastated they have been by the infertility," Johannesson said. "Following them through the pregnancy and just being there and being able to deliver — it's the best day of their life. And it's also one of the best days of our life. It's absolutely amazing just to see the look in their eyes when we hold that baby up." 

Indy, named after Kayla's family love of racing, rarely cries, the couple says. She doesn't like to be swaddled, but she does like to be held. A lot. That's OK with them.  

The couple could have second baby after undergoing IVF a second time with the donated uterus and are considering it. After that, they hope to meet the uterus donor.  For now, they just exchange letters with the anonymous donor and sign their initials, as is Baylor policy. The two can meet  when the uterus is removed. 

"I constantly think of her," Kayla said. "It gets me emotional. I hope one day we can meet and I can lay Indy in her arms and tell her how grateful we are."

Another mom shares her story

Earlier this month, Peyton Meave, 24, the third mother to deliver a baby following a uterus transplant, also decided to join Kayla in sharing her journey.

She spoke about the experimental procedure during a news conference alongside her 3-month-old daughter Emersyn Rae.

During the news conference, the two moms, Kayla and Peyton, held their little miracles while offering hope to others who also may be struggling with infertility.

Kayla intends to keep on speaking on her blog, "Beautifully Barren," and anywhere else because she remembers when she was alone and Googling and considering a move to Sweden. 

"I have a lot of girls born with my condition reaching out to me and it's an honor to be able to share with them and talk to them and answer all their questions," she said. "I just hope that my story inspires them. When I was first diagnosed, I had no one and nothing to look at.

"Maybe they'll see me and our baby. Everything we went through will have all been worth it to me."

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