Someday Sienna Dauer will fully understand what a miracle it is that she was ever born. But for the moment, the 3-year-old was happy to sit on her daddy’s lap while he and her mom talked about the amazing medical technology that made Sienna’s life possible.
Sienna is only the second child in the world born to a woman who had an ovary removed, frozen, and then implanted back into her body after undergoing chemotherapy for cancer. The procedure is still experimental. But it worked for Annie Dauer, Sienna’s mother — and now it is being used to preserve ovarian tissue in young women and even girls facing medical treatments that could render them sterile.
Annie Dauer, her husband Greg and Sienna were featured on Day 3 of TODAY’s series “Rethinking Infertility,” along with a 5-year-old girl and a 16-year-old girl who have also had ovarian tissue frozen in hopes they will eventually be able to have children.
Leap of faith“It’s just a leap of faith you’re taking, just like every day in life people take leaps of faith,” said Annie Dauer, who is pregnant with her second child since having her ovarian tissue re-implanted in her body. “This is just giving cancer patients a hope that technology will catch up by that time and they will be able to have children.”
The Dauers were on TODAY previously — in 2005, when Annie learned that she was pregnant. Watching that show was Stacy Trebing, whose 2-year-old daughter, Katie, had a rare form of anemia that prevented her bone marrow from producing any red blood cells at all. Katie was kept alive through monthly blood transfusions until her baby brother was born with a perfect match for a bone marrow transplant.
Happily, that procedure saved Katie’s life; she’s now a healthy and completely normal 5-year-old. But it carried a high risk of rendering her sterile, and before the transplant, Trebing wondered if there was a way to allow her daughter to have her own children when she grew up.
“I was watching the TODAY show,” Trebing recalled. “And this woman was on, and she started to talk about how she had her ovary frozen prior to her chemotherapy. And I thought, ‘Well, I wonder if I could do that for Katie?’ ”
As it happened, she could. Dr. Kutluk Oktay, one of just a handful of doctors worldwide who perform the procedure, agreed to preserve Katie’s ovarian tissue.
Prepubescent boys who are rendered sterile by chemotherapy and radiation have no options to preserve the possibility of fathering their own children, because they don’t start producing sperm until puberty. But a girl is born with a lifetime supply of eggs — as many as a million of them — in her ovaries. Theoretically, the ovarian tissue can be frozen, then implanted back into the girl when she grows up.
The procedure is so new that fewer than 100 girls have undergone it. None is yet at an age when Oktay can see whether the frozen tissue will begin producing mature eggs. But, he said, “This procedure connects them to the future and allows them to maybe have a more positive outlook.”
“If you ask Katie what she wants to be when she grows up, it's always a mom,” Trebing said. She readily signed up to have one of Katie’s ovaries removed and the tissue frozen.
“It's very important to me that we did this,” she said. “If we hadn't done this, my heart would have melted every time she says that [she wants to be a mom].”
Keeping options open
Leah Veloudas, 16, has also had ovarian tissue removed. She had a cancerous tumor near her bladder. Her parents heard about the procedure and, after they discussed it with Leah, their daughter decided to undergo the procedure.
Leah talked to NBC News from her Westchester County, N.Y., hospital bed in June, just before Oktay performed the laparoscopic surgery. “It’s kind of weird thinking about whether I want kids or not,” the teenager admitted. “Right now, I definitely don't. It's kind of weird to think about what I’m going to want in the future, but I guess keep all my options open, just in case.”
“It’s going to be a rough road probably the next year or so with the chemo,” Leah’s mother said before the procedure. “But I believe that she is going to pull through. She's a trouper, and I can't wait for that day when she has her own children and I have a grandchild.”
After chemotherapy, Leah’s tumor shrank and became inert. It will have to be removed surgically, and she is not cured yet, but her parents and doctors are optimistic about her chances.
A jump startOktay doesn’t reattach a whole ovary back to its original location. Instead, he cuts the ovary into pieces and freezes them individually. In Annie Dauer’s case, he implanted the revived tissue under the skin of her stomach, where it attached to her blood vessels and began producing hormones and eggs.
The idea is to harvest the eggs and fertilize them in an in vitro procedure. In Dauer’s case, the revived ovarian tissue somehow jump-started the ovary that was left in her body, and she was able to conceive two children naturally.
The procedure is still highly experimental, and Otkay has reimplanted tissue in only six women. Dauer is the only one who has successfully conceived a child. Oktay emphasizes that the procedure is not for everyone; women and parents need to carefully review all their options before undergoing any procedure.
Dauer said it’s gratifying to know that her story may someday help girls like Leah and Katie.
“For us, it’s kind of a full circle,” she told TODAY’s Matt Lauer. “We’re given so many blessings with what we went through, and we thought, ‘We need to share this with the world and tell people that there are options out there.’
“So, to see [Katie’s] story and to see her parents hopeful — it’s awesome.”