Should Parents of Kids With Genetic Disorders Have More Children?

cribI just read a story about a family with three children who have the rare genetic disorder called Ehlers Danlos Syndrome. The youngest, Finley Green, is a toddler who has been in and out of the hospital his entire life. He has a cyst on his brain and for the first 11 months of his life he was fed through a tube in his nose. This Christmas Finley received the gift of special equipment that will help his development.

It's wonderful that the Green family is getting some help, but I keep wondering -- what motivated the Greens to take a huge risk after that first child and have two more children? If you find out your first child has a genetic disorder, you know there's the chance that your next children could also have that disorder. Then again, those next children could be fine. How do you choose?

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We've all known parents who have more kids than they originally wanted because they were holding out for that girl -- or that boy, depending. But a genetic disorder ups the stakes for having more kids to the moon. Just one child with Ehlers Danlos Syndrome can bring massive stress to a family. Mrs. Green says Finley "needs physio three times a day including speech therapy and he gets tired. He just wants to play with his brother and sister." 

There is no cure and no treatment for Ehlers Danlos. All you can do is manage the symptoms, which can be anything from double-jointedness to early arthritis and internal organ damage. With three kids on feeding tubes (through the stomach, now) the Greens have left behind any hope for a normal life. If they could do it all again, would they choose to have all three children? Just one? None at all? If it were me, I would chose not to gamble. But that's not a question I could answer for another parent -- ever.

Of course, the Greens may not have gotten a solid diagnosis until after that third child was born. Ehlers Danlos can look like a lot of other illnesses and conditions. But other parents have made similar gambles -- knowing that the odds for a genetic disorder are high for them, they choose to have another child anyway. It's shocking to me. But I respect that decision.

If you knew you and your spouse were at risk for passing on a genetic disorder, would you choose to have a child anyway? What about more than one child?

 

Image via jessicafm/Flickr

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