A couple used IVF to conceive their child because they're both carriers of a rare genetic disease that can be lethal by age 5

• Andrew Davies and Molly Wernick both carry the gene for Tay-Sachs disease.
• They used in vitro fertilization to conceive a child without the fatal disease.

Before Andrew Davies and Molly Wernick decided to get married, they knew they would need medical intervention to grow their family. Davies and Wernick don't struggle with infertility, but they both carry the gene for Tay-Sachs disease.

The couple did genetic testing through JScreen, a nonprofit that serves people in at-risk populations, including people of Jewish descent. Then, a counselor laid out their options for reproducing. If they got pregnant naturally, they had a 25% chance of conceiving a fetus with the fatal disorder and a 50% chance of having a fetus that's a carrier of the gene, like them. They wouldn't be able to test a fetus for Tay-Sachs until 16 weeks.

"Conceiving without assisted reproductive technology could mean signing ourselves up to choose between terminating a pregnancy at four months or watching our infant die from Tay-Sachs," Davies said.

They worry about access to abortion and assisted reproduction

According to Mayo Clinic, Tay-Sachs is a disease passed from parent to child. It's caused when an enzyme that helps break down fatty substances is missing. These fatty substances then build up, causing toxic levels in the body. Symptoms in children start around 3 to 6 months old and, according to the Cleveland Clinic, children with the disease will "often pass away by age 5."

Davies and Wernick were watching the news about abortion access and reproductive health carefully. When Supreme Court Justice Anthony Kennedy announced his retirement in 2018, the couple realized that with Roe v. Wade under attack, their ability to grow the family they wanted — and terminate a pregnancy involving Tay-Sachs — might be compromised.

"We didn't know if we would have access to that choice," Wernick said.

The couple already knew they wanted to pursue in vitro fertilization. With assisted reproduction, they could test any embryos before implantation. They would know from the start that the fetus Wernick was carrying didn't have a fatal disease.

But they worried that as the Supreme Court infringed on abortion rights, they might not have the same access to assisted reproduction. They moved ahead with IVF, and Wernick got pregnant with their son, Miller, who was born last year. Yet when Justice Amy Coney Barrett was confirmed to the Supreme Court, Wernick booked a call with her IVF nurse, terrified that abortion legislation could affect the embryos that she and her husband had frozen.

"The political climate really does affect us," Davies said.

They're open to children who are carriers of Tay-Sachs

Miller doesn't have Tay-Sachs and is not a carrier of the disease. But the viable embryos that the couple has left all carry the gene that Davies and Wernick have. Still, the couple hope to have another child from the embryos they've already produced. That means their next child will likely be a Tay-Sachs carrier.

"It's conversations that we'll have to have with a hopeful next child," Wernick said. "These are the implications of carrying this, and there are steps you'll have to take if you want biological children."

Tay-Sachs is most common among people of Jewish, Creole, Amish, or Quebecois ancestry. But even among those populations, the disease is rare. Wernick isn't willing to go through another egg retrieval to produce more viable embryos that don't carry the gene, which would solve a problem that might never come up.

"Mentally, emotionally, and financially, it's not worth it," she said.

The politics become personal

Davies and Wernick are continuously influenced by reproductive-health legislation, even in their most private moments. Knowing they may not have access to abortion if they unintentionally conceive a fetus with Tay-Sachs "has implications on the type of contraception that we have used and will continue to use," Wernick said.

That's part of the reason they want to share their story.

"This process has made clear to me that reproductive rights are not just about abortion. It's about every family's ability to figure out what's right for them," Davies said.

"For us, IVF is the right choice. Molly and I worry about other families like ours that may not have the ability to make these choices and decide with the doctors that's right for them," he added. "It's so deeply personal, but the political becomes personal."