Publication date: May 30, 2019
Andrew and Amy Synnott had their first child, Eamon, in December 2018.
Amy’s father had Huntington’s disease, a hereditary neurodegenerative disease that has a 50 percent chance of being passed from parent to child.
But Amy and Andrew, who are both 37 and live in Hawaii, knew they wanted to have a child and wanted to make sure they wouldn’t potentially pass the gene on to their future children.
Advancements in science now allow people who are carriers for certain diseases to have a child they know won’t be a carrier of that disease.
Amy and Andrew, for example, were able to conceive a child they knew wouldn’t have the Huntington’s disease gene, despite Amy being a carrier.
Many people who are carriers for genetic conditions (think cystic fibrosis, Duchenne muscular dystrophy, and Tay-Sachs disease) go through a journey similar to the Synnotts.
Deciding whether or not to have kids as a carrier can be emotionally taxing, and for couples who do wish to conceive without passing along the gene in question – the road to having children can be both arduous and costly.
For anyone who’s a carrier for certain genetic conditions but would like to have a child without the gene in question, there are a handful of options, according to James Grifo, MD, PhD, program director at New York University Langone Health’s Prelude Fertility Center.
One of these is to use an egg or sperm donation, though Grifo says people often don’t pursue this route because they’d prefer to create a baby with both parents’ genetic material.
In order for a child to be born with cystic fibrosis, both parents have to be carriers.
If just one parent has the gene, they’ll still pass that gene down to their child, who will then also become a carrier.
Not necessarily because of the difficulties that accompany having a child with CF, she says, but rather because it’s risky for children with cystic fibrosis to be near each other, as the risk of transmitting an infection is higher.
Grifo says people who are carriers for certain genetic diseases often struggle when it comes to deciding whether they’d like to have children and if so, what path they will take.
-There is a lot of guilt associated with genetic disease – that if you’re a parent and you have a baby with it, that it’s your fault,” Grifo says.
Chelsie Legree, 27, tested positive for the Huntington’s disease gene when she was 18.
Now, she and her fianccE9 have decided they’d like to have one child who they know doesn’t have the Huntington’s disease gene.
She says her stepmother, for example, views her decision to have a child as selfish, as she anticipates Legree would show symptoms by midlife and would therefore be leaving her kids without a mom.
Many people who wish to have children without the genetic conditions they’re carriers for deal with significant criticism.
|disease||MESH||Duchenne muscular dystrophy|
|disease||DOID||Duchenne muscular dystrophy|
|disease||MESH||hereditary neurodegenerative disease|