- Both Andrew Davis and Molly Wernick Jane have Tay-Sachs disease.
- They used in vitro fertilization to produce a child without fatal disease.
- The couple is concerned about how reproductive rights legislation will affect families like theirs.
Before Andrew Davis and Molly Wernick decided to marry, they knew they would need medical intervention to grow their family. Davis and Wernicke don’t wrestle with him infertilitybut they both carry the gene for Tay-Sachs disease.
The couple did genetic testing JScreen, a non-profit organization that serves people in high-risk populations, including people of Jewish descent. The counselor then selects their options for reproduction. if they get pregnant Of course, they had a 25% chance of having a fetus with fatal disorder and a 50% chance of having a fetus carrying the gene like them. They will not be able to test the fetus for Tay-Sachs until 16 weeks.
“Pregnancy without assisted reproductive technology could mean registering ourselves to choose between terminating the pregnancy at four months or watching our baby die from Tay-Sachs,” Davis said.
They are concerned about access to abortion and assisted reproduction
according to Mayo ClinicTay-Sachs disease is passed from father to child. This is caused by the loss of an enzyme that helps break down fatty substances. These fatty substances then accumulate causing toxic levels in the body. Symptoms begin in babies 3 to 6 months of age, according to Cleveland ClinicChildren with this disease “often die by the age of five”.
Davis and Wernicke carefully watched the news about access to abortion and reproductive health. 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 end a pregnancy that included Tay-Sachs — could be jeopardized.
“We didn’t know if we’d have access to that option,” Wernick said.
The couple already knew they wanted to continue in vitro fertilization. With assisted reproduction, they can test any embryos before implantation. They knew from the start that the fetus that Wernick was carrying did not have a fatal disease.
But they were concerned that since the Supreme Court was violating abortion rights, they might not have the same access to assisted reproduction. They went ahead with IVF, and Wernick became pregnant with their son Miller, who was born last year. However, when Judge Amy Connie Barrett was confirmed to the Supreme Court, Wernick booked a call with the IVF nurse, fearing that legalizing abortion could affect the fetuses she and her husband had frozen.
“The political climate really affects us,” Davies said.
It is open to children who hold Thai-Sachs
Miller does not have a Tay-Sachs and does not carry the disease. But the viable embryos left by the couple all carry the gene carried by Davis and Wernicke. However, the couple hope to have another child from the fetuses they have already produced. This means that their next child will likely be a Tay-Sachs carrier.
“They are conversations we should be having with an optimistic new baby,” Wernick said. “These are the implications of carrying this, and there are steps you have to take if you want biological children.”
Thai sax most popular Among people of Jewish, Creole, Amish, or Quebecoa descent. But the disease is rare even among this population. Wernicke doesn’t want to go through another egg retrieval process to produce more viable embryos that don’t carry the gene, which could solve a problem that may never appear.
“Mentally, emotionally and financially,” she said, “it’s just not worth it.”
Politics becomes personal
Davis and Wernicke are constantly influenced by reproductive health legislation, even in its most private moments. Wernick said the knowledge that they may not have access to an abortion if they inadvertently carry a fetus with Tay-Sachs “has implications for the type of contraception we have used and will continue to use.”
This is part of the reason they want to share their story.
“This process made it clear to me that reproductive rights aren’t just about abortion,” Davis said. “It’s about every family’s ability to know what’s right for them.”
He added, “For us, IVF is the right choice. Molly and I are concerned about other families like ours who may not have the ability to make these choices and decide with the right doctors for them.” “It’s very personal, but the politician gets personal.”