Possible 'Cure' for Down Syndrome Seems So Wrong

Rant 103

baby handIn what is no doubt very interesting news, a new scientific breakthrough has found a molecule to "reverse" the effects of Down syndrome in mice.

The mice involved in the research were genetically altered to mimic the characteristics of Down syndrome, and when they were born, they were given injections of the molecule, called sonic hedgehog pathway agonist. It urges on a gene that generates a protein shown to normalize the growth of the cerebellum -- a part of the brain that is typically 60 percent of its normal size in people who have Down syndrome.

The injections were also shown to improve memory and learning, which are controlled by the hippocampus.

And while there are no plans to attempt this sort of treatment on human newborns -- it does raise the question of whether or not parents would want the injections for their babies if it ever did become an option.

After thinking long and hard about what I would do if I had a baby with Down syndrome and there was the option of trying to reverse it -- the decision suddenly became crystal clear. I'm just not sure I could bring myself to do it -- unless I knew 100 percent that there were absolutely no risks involved -- and that I wasn't necessarily "changing" who my baby was by allowing the treatment.

Here's the thing -- I'm an "everything happens for a reason and things are meant to be" type of person. And when it comes to babies, I firmly believe that you get the child you are supposed to have -- and you love that baby unconditionally no matter what.

I think that if I were to have a baby born with Down syndrome -- it would feel like I was somehow monkeying with nature by injecting him with something to physically alter who he is simply because he's not "perfect," -- and something about that doesn't seem right.

And I know the argument can be made that trying to "reverse" Down syndrome isn't really all that different from treating a baby who has an illness in the hopes of making him well again. But Down syndrome isn't a disease (or at least I've never thought of it that way at all) -- which makes me think that trying to reverse it is basically like trying to change a baby's genetic makeup.

But since being faced with making a decision like this is merely hypothetical, I guess I really can't know for sure how I would feel if I knew my child would not grow up and develop normally -- which is why I would never judge moms and dads who did make the choice to do this treatment should it ever become available to humans. Who knows -- maybe I'd feel the complete opposite if my son had Down syndrome. You can never really know what someone has gone through unless you walk a mile in their shoes, right?

The best thing any parents can do for their babies is whatever they feel in their hearts is the right thing. All we can really do is love our children wholeheartedly and do what we believe is best for them -- and hope that we've made the wisest possible choice.

Would you want your child to have this treatment?


Image via miss pupik/Flickr

baby health


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work4... work4mickey

If this were to be successful (past the experimental and clinical trial phases and shown to have minimal risks) and if I had a child with down syndrome, I most certainly would. Of course you should love your children as they are, but children grow into adults, and I won't be around forever. This would be something you would do to help ensure that they can grow up to be self reliant. If you can avoid it, after you are gone you don't want your ospring dependant on a caregiver who you can only hope will treat them properly. You won't be there to act as their advocate. I would do it because, ultimately, it is in their best intersts.

Ladyw... Ladywithtwo

I think this is incredible. Why wouldn't you want to give your child every advantage in life?

knitt... knittykitty99

Many children with down syndrome have heart conditions and some require surgery.  Is this also "monkeying with nature"?

manda... mandaschelle

Hell yes I would give my child something to improve the over all quality of their life.

I was a "special needs" child and my parents gave me the gift of a real life at age 12. My only regret and theirs is that they didn't do it sooner.

Stama... Stamatina79

Did no one read flowers for algernon?

nonmember avatar Jason

Writer: How many special needs children do you have?
Caring for my autistic child is terribly hard...but I love him anyway. I do what I can to make him happy, he likes Pixar movies and chocolate ice cream... but I suspect he'll never play baseball...or chess.
He goes to school with a pair of twins who both have downs. I feel for them, and their (apparently single) mother. These children, like mine, will most likely never get married, drive a car, or have a job... or live anything even resembling a normal life.
If something can be done for any of these children, we should try.
We try to treat other terrible illnesses, like leukemia and cancer...right?

nonmember avatar FarmersWifef

The scarier side- if and when this does become available to humans- parents won't have the choice. Hospitals will be taking parents to court to force treatment and wonderful parents will be losing custody for choosing to let their kid be.

nonmember avatar Cass

Yay, my expertise is relevant!

Sonic hedgehog basically spurs on neurological development. It also helps create a gradient so that your spine is formed on one side and your belly on the other. In this case, they're basically increasing gestation time outside of the womb. This could help cerebellum development, but there's no guarantee that it would fix ("rescue" in genetic terminology) the cognitive deficits. It also would have zero effect on non-neuronal symptoms of Down's.

It's a fantastic study, but not one that should be discussed on a mommy blog as a possible cure. Fact is, you can't create a perfect mouse model of anything- mice have (I believe) 19 pairs of chromosomes, not 23. Each chromosome of ours doesn't necessarily match one of theirs. We don't have a better option at this point, but please keep in mind that purposely causing a problem and fixing it may not be equivalent to fixing the naturally occurring problem. At the very least, take it with a grain of salt.

Nelli... NellieAthome

Ms Fischer  says "unless I knew 100 percent that there were absolutely no risks involved"

Nothing in life is risk free. With that attitude why even risk having a child to begin with

nonmember avatar Johnie

OMG stamatina I love that book!!! I worked for a company for 3 years that worked with adults who are special needs/mentally ill. I was a lead in the home and asked all my staff to read that book. I read it in school and fell in love it. I recommmend it to every one. It really gets into the mind of a developmentally delayed person

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