Friday, November 9, 2012

Would you "change" your child with Down syndrome?

I posted a link to this study earlier this morning on my Face Book page. It is a fascinating article on how scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Trisomy 21. The discussion on Face Book was quite interesting & I'd like to share more of my thoughts here.

 Some of the discussion was about changing our kids. This treatment is not intended to do that but I'm going to address it anyways.  I would not want to change K but in her case I can't see how "taking away" her Trisomy 21 would really change who she is.   Besides, we've been doing that already. We have been working with K since she was a newborn using her neurodevelopmental program & supplements. In the last couple of years we have used more vitamins & supplements to help her.  We have taken her to a chiropractor since she was a few weeks old. K has been seeing a natural doctor occasionally & sees a cranial sacral therapist once a month.  All of these things have been done to help her overcome the effects of the extra 21st chromosome.  Have we changed her with all of this effort?  Probably............& I hope so, I love who K is - she's amazing & so much fun to be with.  Maybe if we hadn't done those things she would not be able to communicate who she is as well as she does. Who knows how different she would have been had we not done all of those interventions?  K had a strong, vibrant personality that shines through regardless of that chromosome - removing it would not change her.  She'd be the same little girl who perhaps could run as fast as the other  kids or speak just as clearly without quite so much effort.

I asked the rest of the family individually after I wrote this if they thought removing the chromosome would change K.  All agreed that it would not although one of my daughters said she'd just be able to express her sauciness better  - & she's probably right!

The one possible medical scenario mentioned was the possibility of being able to aid in the recovery of patients who have leukemia by giving them a stem cell transplant using their own stem cells that have had the extra chromosome removed. I have a friend whose little girl is fighting leukemia right now. Her daughter is a fighter & doing great but I'd love to tell her that we could change her daughter's stem cells to give her even better odds of surviving.

Later in the article it talks about possible applications with early aging or adult mental decline.  My thoughts immediately went to Alzheimer's disease.  We know  that's a pretty universal concern for people with Trisomy 21.  I would welcome the chance to change my daughter in those ways.

When the question of changing our kids has come up in the past my mind immediately jumps to the medical issues.   K's heart problems are  very minor I'm told & I'm thankful for that but it's still a nagging worry.  Yes I'd change that too.

Often when we talk about changing her kids we mean their cognitive function. My last point on this subject is that many of us are already doing this.  It is commonly known that our kids are much more likely to develop thyroid problems.  Untreated thyroid problems lead to cognitive decline.  We have no problems treating this cognitive problem so why wouldn't we treat other cognitive problems if it were possible?

Edited:  I'm adding one more point here.   Aren't we all changing our kids any time we take them to any mainstream therapy too? The point of therapy is to help our kids gain skills, I'm just going about it in a bit different way.

I also want to clarify, & I have said this before but to repeat in case you haven't heard, I will always look into any new treatment or drug very carefully before giving it to K.  When it comes to new drugs I am especially leery because I believe every drug has side effects & in many cases there is a safer natural alternative.

My other point is that we don't have to wait for a "cure" to get started helping our kids.  I blogged about this here the other day.  There are so many different things that we can try.  Some may work for one child but not another but there are lots of options & I'm excited to see new research  being done because even though we have all of those options I'm sure there are a lot of things we are missing that will greatly benefit our kids.

I'd love to hear your thoughts on this.  Would you "change" your child?


  1. Well I have every intention to get her a palatal expander, so my only honest answer is a resounding YES!

  2. Yes, another fascinating intervention - we're waiting for our holistic dentist to decide that it is time to start this with K.

  3. Yes I would try, why not? We all are trying to change our children for the better. Those that say no, I wouldn't change a thing, do want better speech, better cognitive development, so everything they are doing to improve all of that IS changing their children.

  4. When we hear the sentence "changing your child", I think some may see it as give back your "defective" child with a "perfect" one...
    Of course this is not what is all about!
    As you said, we are already trying to "change" our children, with therapies, drugs, exercises, surgeries, ecc...
    Like we do with all our "normal" children. If they have a problem we try to solve it, if they have a eyes problem we buy them glasses, if they have problems in learning we call a private teacher to help them.
    Does this mean we are changing them?
    I think we are making them better persons, able to develop all their potential.
    So in some way, we don't change what they really are, but help them to express their real self.
    Like you said, we need to be carefull in using drugs, but it's a great thing that research is progressing in this field.
    In the past 50 years so many things changed for persons with down syndrome, I'm sure in another 50 years we will be able to do much more and maybe having a baby with down syndrome won't be anymore the worst fear of pregnant women!

  5. I think it's excellent and I'd do everything possible to help my daughter. Her soul and her essence are not determined by the extra copy of Chromosome 21. I'm curious what you give your daughter for vitamins to help her?

  6. I'm not sure if my previous post showed up as Google brought me to the login screen, so I apologize if I'm repeating myself!
    I will do whatever I possibly can to benefit my daughter's health and well-being. As a mother I believe that is my job. I saw the same post on 'Noah's Dad' and commented that I'm very much in favor of research. What I did not say there was this: I believe that most parents of children with Down syndrome do not want society to look at their child and only see a chromosomal abnormality. How could we possibly ask that of society when we have shown through a fear of research that we believe our children would be changed if they only had 46 chromosomes. My daughter is a beautiful soul with a temper and a stubborn streak...her body, her Earthly biology has little to do with her essence. I don't agree with the idea that wanting to give your child every benefit has to equal the fact that you don't love them completely as they are. Quite the contrary is true in my personal opinion. It isn't about me or her dad or her siblings or anyone else. It is her life, and just like I plan to do for my child with 46 chromosomes, I will help her reach for the stars.

  7. Interesting exchange.

    I think you said it best in your blog description. "I believe kids with Down syndrome can do amazing things if we give them the right tools. I truly believe high expectations can make a tremendous difference in the lives of our children!"