Keston, Andrea, and Delaney Ott-Dahl. Photo courtesy of the Ott-Dahls.
When news broke earlier this month about baby Gammy — the newborn with Down syndrome who was left (or kept) in Thailand with his surrogate mother while his intended adoptive parents returned to Australia with his twin sister — many were shocked. But not Keston and Andrea Ott-Dahl, a San Francisco couple who had a similar experience right here in America.
“We were not surprised, because it happened to us,” Keston, 48, told Yahoo Health. She’s referring to the roller-coaster ride she and her partner, Andrea, had in 2012, when Andrea agreed to be a surrogate for their friends, another lesbian couple who wanted a child but was having trouble conceiving. So she agreed to become impregnated with the sperm of their friends’ gay male friend, and they were off.
“I had no reservations about it,” Andrea, 32, told Yahoo Health, “because I’d already had two kids, and we were looking forward to the day when we’d have less responsibility. I just saw our friends who wanted this dream so badly, and I thought it would be easy for me.” Keston added, “We thought we were doing something wonderful.”
What wound up happening was unexpectedly heart-wrenching for everyone: A routine fetal exam revealed that the baby Andrea was carrying had Down syndrome, and doctors said the baby would most likely die due to a birth defect called cystic hygroma. The intended moms requested that Andrea abort the fetus. It was a scenario that had been discussed ahead of time, and it was even included in the legal contract drawn up between both parties. “We had said we’d terminate at their request for medical reasons,” Keston said. “But nobody ever thought we’d be in this situation.”
Delaney. Photo courtesy of the Ott-Dahls.
At first, Keston said, “I’m not proud of this, but I agreed. I was terrified of people [with Down syndrome], repulsed, and I sympathized with them for backing out.” Andrea, meanwhile, said that she dreaded terminating the pregnancy, because she’d had an abortion years before and it “weighed heavily” on her. Still, she would have gone along with the agreement if everyone had been on the same page. But when Keston told her she could not condone the abortion, Andrea said it was “the happiest day of my life” when they decided together that they would keep and raise the baby as their own.
Things soon became complicated. The friends briefly threatened legal action, an attorney friend of the Ott-Dahls deemed the contract unenforceable, the friends backed out, and the sperm donor, along with his partner, disappeared and then reappeared right before the baby was born, saying they wanted to be her fathers (though they are no longer in the picture, according to Keston). Meanwhile, the Ott-Dahls had to grapple with explaining it all to their two kids (now 6 and 8) — specifically, that instead of Andrea becoming pregnant and having a baby and handing it over to another couple, the kids would have a new sibling, but that there would be “something wrong” with her.
After their baby girl, Delaney, was born in July 2013, it was discovered that she did not have cystic hygroma but did have Down Syndrome. Andrea and Keston are no longer friends with the women Andrea had intended to surrogate for, and the couple has never met Delaney, though Keston and Andrea both said they understand and have no ill will toward them. Still, getting through the initial disagreement and subsequent fallout was difficult.
Victoria Ferrara, a surrogacy attorney who runs Worldwide Surrogacy Specialists in Connecticut, told Yahoo Health that it’s not so unusual for intended parents to find their own surrogates through friends or family. “My experience is that it’s worked out really beautifully,” she said, adding that “these problem cases are really rare.” But Ferrara, author of the book “Gestational Surrogacy, a Primer,” also added, “It’s a complicated way to have a baby. The making of the match [between parents] is really important, which is why agencies come into play.” She noted that the issue of Down syndrome, and what to do if it’s detected tends to come up frequently, and that agreement between the parties on the topic is crucial.
Delaney tubing with Andrea. Photo courtesy of the Ott-Dahls.
To avoid potential conflicts, Ferrara advises that everyone involved pay close attention to the details in a contract and to laws, which vary by state. “Everyone might even consider meeting with a psychologist to help uncover concerns that are not being voiced,” she said. “A trained professional will ask the question so it can’t be avoided.”
Early conflict aside, Delaney, who has undergone surgery to repair a hole in her heart, is now thriving. She has a devoted following on the Facebook page her moms have created to track her progress, and Keston has written a memoir about their experience called “Delaney Skye” (currently seeking a publisher through her agent). The couple has also set up the Delaney Ott-Dahl Foundation, to help spread awareness about prenatal testing and the high quality of life the family says children with Down syndrome can have today.
“I had a new clarity about the world around me and saw a new side to discrimination—especially my own,” said Keston about their journey, adding that their “little fighter” has taught their other kids “humanity and pride.”
“I’m hoping I can get people to see kids like Delaney with different eyes,” she said, that statistics, albeit fairly outdated, show that pregnancies are terminated 70 to 90 percent of the time when Down Syndrome is detected in a fetus. The often-quoted 90 percent is based on a Prenatal Diagnosis journal paper from 1999; a more recent paper in the same journal, according to the Atlantic, noted the percentage is now somewhere between 60 and 90 percent.) Several states — Massachusetts, Virginia, Kentucky, Missouri and, as of this week, Pennsylvania — have passed laws requiring that expectant parents of babies with a prenatal Down syndrome diagnosis receive accurate, up-to-date information about the condition.
“People know what they can handle, and I would never presume to tell anyone what to do,” Keston said. “But life is unexpected, and you should educate yourself.” Andrea added, “I wish that the intended parents would have gotten a bit more education [about children with Down syndrome]. It’s not really as scary as everyone thinks it is.”
By sharing their story on the heels of the controversy in Thailand (which has changed shape many times since it was originally reported), the Ott-Dahls hope to spread awareness of surrogacy complications, as well. “When you deal with a surrogate, you can open up a moral and legal can of worms beyond the simple surrogacy,” Keston said. So, while she wouldn’t necessarily advise against the practice, she said, “I would do it with open eyes. Understand you’re not getting a designer baby. You get what you get.”