A couple underwent IVF to create their child because they’re both carriers of a rare genetic illness that can be fatal by age 5

Andrew Davies and Molly Wernick knew they would require medical assistance to start a family before they agreed to get married. Davies and Wernick do not experience infertility, although both carry the Tay-Sachs disease gene.

The couple underwent genetic testing through JScreen, a nonprofit organization that supports at-risk communities, including Jews. Then, a counselor outlined their reproductive options. They had a 25% risk of conceiving a fetus with the deadly illness and a 50% chance of conceiving a fetus that is a carrier of the gene, like them, if they became pregnant normally. At 16 weeks, they would be able to test a fetus for Tay-Sachs.

“Conceiving without assisted reproductive technology could force us to choose between terminating a pregnancy at four months or watching our child pass away from Tay-Sachs disease,” added Davies.

They are concerned about abortion access and assisted reproduction

According to the Mayo Clinic, Tay-Sachs is an inherited child. It is caused by the absence of an enzyme that aids in the breakdown of fatty compounds. The accumulation of these fatty compounds causes hazardous amounts throughout the body. Children develop symptoms between 3 and 6 months of age, and according to the Cleveland Clinic, children with the disease “typically die by age 5.”

Davies and Wernick were attentively following the news around abortion access and reproductive health. In 2018, when Supreme Court Justice Anthony Kennedy announced his retirement, the couple understood that with Roe v. Wade under attack, their freedom to have the family they want and to terminate a pregnancy including Tay-Sachs could be jeopardized.

Wernick stated, “We did not know if we would have access to that option.”

Thanks to Molly Wernick

The couple was previously aware that they desired in vitro conception. With assisted reproduction, embryos could be examined prior to implantation. They would know from the beginning that Wernick’s fetus did not have a fatal illness.

However, they feared that as the Supreme Court restricted abortion rights, their access to assisted reproduction would diminish. They proceeded with IVF, and Wernick conceived their son Miller, who was born last year. Nonetheless, after the confirmation of Justice Amy Coney Barrett to the Supreme Court, Wernick scheduled a conversation with her IVF nurse, worried that abortion legislation could damage the embryos that she and her husband had frozen.

“The political situation truly affects us,” added Davies.

They are available to children who carry the Tay-Sachs gene.

Miller does not have Tay-Sachs and is not a disease carrier. The remaining surviving embryos, however, all possess the gene that Davies and Wernick share. Nonetheless, the couple hopes to have another child using embryos that they have already created. This indicates that their future child will likely carry the Tay-Sachs gene.

Wernick remarked, “These are conversations we’ll have to have with a prospective second child.” “These are the consequences of carrying this, and you’ll need to take certain procedures if you want biological children.”

Most individuals with Jewish, Creole, Amish, or Quebecois ancestry have Tay-Sachs. However, even within these populations, the sickness is uncommon. Wernick is unwilling to undergo a second egg retrieval to make more viable embryos without the gene, which would alleviate a potential problem that may never occur.

She stated, “Mentally, emotionally, and financially, it is not worth it.”

Politics has gotten personal.

Even at their most private moments, Davies and Wernick are continuously influenced by reproductive-health legislation. Knowing that they may not have access to an abortion if they accidently conceive a Tay-Sachs fetus “has ramifications for the sort of contraception we have used and will continue to use,” Wernick said.

This is one reason why they wish to tell their tale.

“This procedure has demonstrated to me that reproductive rights extend beyond abortion. It depends on each family’s ability to determine what is best for them “Davies stated.

“IVF is the correct choice for us. Molly and I worry about other families like ours who might not be able to make these decisions and decide with their doctors on the best course of action “he added. “It is so intensely personal, but it becomes political.”