cystic fibrosis

Should bad genes = no more kids? – Part 3: reaching out

We talked to other CF parents. One family we know decided to go ahead with more children despite the risks. Their next child was born with CF. They were plagued by feelings of guilt, pain and anguish but they, like us with Katie, have been comforted by the tremendous love, support and gifts that children bring.

We started reading. We stumbled across a blog post written by a guy in the US by the name of Ronnie “Sickboy” Sharpe. Ronnie has CF. He’s in his twenties. He blogs about CF at Ronnie’s post, entitled, Parents, would you roll the dice with CF? caught our eye. In that post, Ronnie explained the debate and he asked:

What would your decision be?

Would you have more children?

CFers, how would you feel if you knew your parents made that choice?

Any parents out there struggling with this very issue?

The comments were inspiring and comforting to us. Parents offered differing views. But what stood out the most were the comments from other CF patients. One comment stood out for me:

As a CFer, I would never say life isn’t worth living because of cystic fibrosis. EVERY LIFE is worth it and although it is difficult, it makes you a very strong person and gives the people around you a different take on life. I don’t think it is fair for anyone to have a sick child, but I think it opens up people’s eyes and touches a lot of lives when they do..and I think the world needs that perspective.

I face the same issues with having a child myself, although my husband is not a carrier, it means my child will be and the gene will continue on. But does that mean that I should be denied the chance to be a mother? I don’t think so. As long as you can love and care for a child, illness or not shouldn’t be a factor.

This captures the essence of it for me: “EVERY LIFE is worth it.”

Next up: Part 4 – the larger ethical debate

By Todd Dow

Author, Geek, CF fundraiser & Cancer Survivor. My family, baseball, infosec, privacy & devops are a few of my favorite things.

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