These Parents Shouldn’t Have To Explain Why They Had A Baby With The Same Genetic Condition As Her Father

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shutterstock_111378464I’m not Miss Manners, but I’m pretty sure it’s never OK to tell a father that it is cruel to bring a child into the world looking like him. There is virtually no situation where it is OK to go to a parent and ask them why they had their child, but one couple says they’ve encountered that question regularly since their daughter was born with Treacher Collins syndrome, a genetic disorder that causes facial deformities. Simon and Vicky Moore say strangers have lambasted them and called them “cruel” for having a baby with the disorder, even though Simon also has Treacher Collins.

According to The Mirror, when one member of a couple has TC, there is a 50-percent chance of passing it on to an infant. The Moores conceived Alice via IVF, which meant they had the option at the time to do genetic testing, but they decided not to because it was too expensive, and they did not really care if the baby had the same condition as her father.

Since Alice was born, the Moores have been faced with a lot of judgment and questions about why they chose to go ahead with her birth and why they did not have genetic testing done to rule out the possibility of having a baby with Treacher Collins syndrome. People have called them “selfish” and “cruel,” and while some curiosity is probably natural, I find myself bewildered that anyone would actually say those things to the parents, especially considering that Alice’s father is a grown adult with Treacher Collins syndrome.

Simon Moore has the same condition as Alice, and I think it’s generally safe to assume that he knows more about living with TC than the rest of us do. He said he had “fantastic parents growing up,” and that Alice will have the same. He does acknowledge that people can be cruel to people who look different, but the possibility of other people being assholes is no reason not to have a baby.

“I never wished for Alice not to have TC,” Simon said. “Even though I grew up with all the problems and complications it really didn’t bother me either way whether she had it or not. We all knew if she had it that she’d be surrounded with people who loved her whatever. There’s nothing on this planet anywhere near as special as Alice. She’s changed my life. There’s no doubt about it. She’s her dad’s little girl and I will tell her she is beautiful every day.”

I’m honestly astonished that someone would go up to a person and effectively say, “It is cruel to bring a child into the world looking like you.”

Vicky says Alice does not need bone reconstruction or have breathing trouble. She has hearing loss, which is apparently common in people with TC, and Vicky says that when Alice has a hearing aid in place and is older, Alice can decide if she is interested in cosmetic surgery.

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