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Parenting Children with Special Needs Blog

12/22/06

Choosing Your Baby’s Disabilities

Posted by : Julie in Parenting Children with Special Needs Blog at 06:35 am , 471 words, 73 views  
Categories: You've Got To Be Kidding Me!
The MSNBC headline “Designer Babies With Made-to-Order Defects” caught my eye. It is an interesting look into the bioethical question of whether couples with disabilities like deafness or dwarfism should be able, through embryo screening, to choose that their baby would be like them in disability.

Although the article points out that there is no evidence that any of the clinics performing what used to be called preimplantation genetic diagnosis(PGD) has actually done this type of screening, the ability is there. And for some the desire.

It’s an interesting argument. Those of us who are not disabled are shocked to even read that someone would consider such a move. But as one woman who considered this type of selection to ensure her baby was a dwarf, like she and her husband said , “You cannot tell me that I cannot have a child who’s going to look like me. It’s just unbelievably presumptuous and they’re playing God.”

And one doctor commented, “In our society, people are so quick to have knee-jerk reactions to something that’s none of their business.”

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Yet, it’s hard for me to get my head around those arguments. I’m not sure my reaction is knee-jerk or that it is none of my business that people would purposely choose disabilities for their children. My father had congestive heart failure and my sister has severe asthma. I can’t imagine either choosing those conditions for their offspring. Same goes for all of LuLu’s disabilities. And I wonder who is playing God. What if the child doesn’t want to have the disability? What if society doesn’t want to provide special services for the child’s disability? (We all know that is often the case with disabled children now!)

But I have a decidedly biased opinion. After all, my only biological child was born never having a sonogram (in 1991), so we had no idea what gender she was, let alone other details about her physical make-up. We did have the prenatal genetic screenings, but for the decided purpose of preparing ourselves for raising her if there was something detected.

And is a similar thought process, I’ve asked myself time and again whether, standing at the door of the Chinese orphanage, if someone would have told me the many disabilities that plagued LuLu, what would I have done? First off, I would likely have NOT believed them that any poor child could be so greatly inflicted. But, beyond that, I doubt I would have done more than scooped her up in my arms and flown home. She was planted in my heart. Now, I would have had the benefit of seeking the right kind of help sooner…but playing God seems to me to be all over this topic, on all sides.


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