Parents Choose to Get Pregnant Despite Knowing Baby Will Probably Be Disfigured

Simon Vicky MooreA set of parents are being called "selfish" and "cruel" for choosing to have a baby despite knowing there was a 50/50 chance it would inherit a genetic condition known as Treacher Collins Syndrome (TC) from the father. Simon and Vicky Moore recently went on morning television to defend their choice to have their little girl, whose name is Alice.

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TC is a genetic mutation that causes facial disfigurement, which can include cleft palates and sealed-off ears. Despite their appearance, people with TC have normal intelligence and can live normal lives. Simon, who was born with the condition, admits that he was and still is gawked at and made fun of for his appearance. He wears a hearing aid, and is a stay-at-home dad to Alice.

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But despite the couple's assurances that Alice is fine (she requires a hearing aid but nothing else) and that she is deeply loved, some members of the public have made clear they think it was cruel of the Moores not to get genetic testing to find out if their baby had TC before choosing to go on with the pregnancy -- despite a 50/50 chance that she'd inherit it from her father.

As a woman with a physical disability, this story hits close to home for me. I was born without fingers on my right hand. Had my mother known about this before I was born, would it have been considered cruel of her not to abort me because my life would be harder in some ways and because I would be made fun of? I hope not. I have had an amazing, blessed life. Have I had my share of painful experiences as a result of my disability? Of course. But life isn't supposed to be easy, and everyone has their struggles.

Having children is a selfish act, period.

The people who are calling this family selfish are allowing their ignorance and discomfort with disabilities do the talking. The fact that it is Alice's face that is primarily affected no doubt has much to do with this; this has to be about appearance because physically she is having no difficulties whatsoever. So is the argument that the Moores should have had an abortion because other people wouldn't like the way their child was going to look? Now that would be selfish. It's other people and their prejudices who have the problem, not Simon and Vicky Moore, and definitely not Alice.

If this couple had unknowingly had a child with TC, people would be full of compassion and support. The Moores would be pitied because they had this forced upon them. But because they made the choice to love this little life regardless of her disability, they are judged. It is clear from interviews that this little girl has a mother who loves her to her very marrow, and a father who can understand her in a way no one else can.

She's going to be just fine. It's the people who think she shouldn't be here who are selfish and cruel.

Check out Alice and her parents, and tell us in comments: what would you do if you had a 50/50 chance of passing on a genetic condition?

 

About the Author: Meredith Bland is a freelance writer whose work has appeared at Time.com; Brain, Mother; The Rumpus; Scary Mommy; and Blogher, among others. She also writes at her humor blog, Pile of Babies. You can follow her on Twitter at @pileofbabies or on Facebook.


Image via SWNS TV/YouTube

 

 

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