Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Raising Special Needs Kids Raising Special Needs Kids

Possible 'Cure' for Down Syndrome Seems So Wrong

Possible 'Cure' for Down Syndrome Seems So Wrong

by Mary Fischer

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?

by on Oct. 11, 2013 at 3:53 PM
Replies (21-26):
MomOfOneCoolKid
by Member on Oct. 12, 2013 at 8:55 PM

 


Quoting Bluecalm:


Quoting DDDaysh:

There isn't enough information here about the possible risks for anyone to make an informed decision.  

However, if this treatment was "safe", I can't imagine not using it.  From what I can tell in the article, it merely reverses the stunted brain growth the chromosomal abnormality caused.  If the treatment was safe and available, NOT giving my child the treatment would seem to me like I was purposefully giving my child brain damage.  

Then again, I give my child "brain altering" ADHD drugs every single day.  I take anti-anxiety medication that alters my brain as well.  I'm ok knowing that my brain does not function perfectly on its own and to know there are things about neural functioning that are good to change.  So maybe that's why I don't freak out so much.  

Let's change the question a bit.  Let's suppose that there was a genetic test for paranoid schizophrenia and you could know as soon as a child was born that they'd develop the dissorder.  There was an injection that would change their brain growth so that they didn't develop the dissorder.  Would you do that?  


Actually, there is genetic testing that shows a risk for schizophrenia and lots of other conditions. My son's deletion is associated with it, but in a different band than his so he is not at risk. When people have chromosomal abnormalities, you know what genes are affected so you know your child may one day develop those things.

I don't think its "mainstream" though.

For example, my son was tested for DS (i think thats common testing) but even telling them that my dh's mom has schizophrenia, they still didn't do any genetic testing. They told me the probability is very very low.

He doesn't have schizophrenia but he does have adhd/autism.

 

arkansasmama08
by Gold Member on Oct. 12, 2013 at 9:40 PM
I don't know. I don't think this would really be considered a "cure" since it only focuses on one part of the disorder. And I dont think it would completely change a person. It sounds like it would aid in developmental abilities, memory, etc. I wouldn't say it would change their complete personality. But, like other responses, I don't have a child with DS. I have children with autism, and can say for a matter of fact that if something like this were developed to help with the problems autism causes them and the risks were low, I would likely consider it. Would I want to change my kids into people they aren't? no. God made them special and special they are meant to be. But I would do everything in my power to make their struggles less and their chance of a successful life more.
benny1031
by on Oct. 13, 2013 at 10:38 PM
1 mom liked this
God gave me my son for a reason he has autism impulsivity spectrum disorder with oppositional defiance disorder if they came up with something to cure it I'm not sure that I would want tot ake such a high risk with his life. They could say that it is safe but you know how these things sometimes work out. I think that we need to focus on finding a cure for disease not a disorder. Imo it just doesn't seem quite right to fool with mother nature.
michele115
by Michele on Oct. 14, 2013 at 9:56 PM

I am not sure. Would I give my son a miracle drug if it was completely safe? Maybe. If it would helo him to be able to talk and learn like typical children it would be a tough choice to make. I hate seeing him struggle to communicate what he wants.

jjamom
by Michele on Oct. 15, 2013 at 7:41 AM
My DH and I have discussed this and that's how he feels as well.


Quoting michele115:

I am not sure. Would I give my son a miracle drug if it was completely safe? Maybe. If it would helo him to be able to talk and learn like typical children it would be a tough choice to make. I hate seeing him struggle to communicate what he wants.


lancet98
by Member on Dec. 11, 2013 at 10:01 PM

Even if it was tested very carefully, there are many effects of Downs gene form, and this treatment only addresses one of them. 

It might make life easier for the person, if that were the case I'd be in favor.

But most likely, the person would still have some other symptoms associated with Downs.  

My concern with downs is far more, about early onset dementia which happens in some.   I wish they'd work on that.   Many people are well adjusted with downs and the dementia really ruins their lives and makes their families very sad.   If I was in charge the dementia would be the first priority in research.

But research on this particular agonist is really good.

Agonists are a very new class of drug and are unique because they do not have the heavy-handed action of older drugs, such as antagonists.   Agonist drugs have a much more natural, softer action and work in coordination with the body chemistry, instead of against it.

It is pretty likely that any research done on downs agonists, would be very applicable to many other illnesses.   What we learn from downs research can help to stop many illnesses, such as parkinsons, dementias, ALS, Huntington's, etc.    

It is kind of ironic that people with downs have various degrees of developmental/intellectual delays, but yet have blessed humankind with incredible knowledge gained thru research and improved understanding of their condition, knowledge which will affect all human kind and be applied to many illnesses.

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN