Einstein Syndrome: Down Syndrome with a Positive Attitude

The topic of whether of not to treat cognition (brains) in Trisomy 21 is surprisingly controversial among parents.  Last week I discussed whether cognitive treament changes core identity. My answer was “no.”  We are changing my daughter’s future, and that future is not written yet.

Today I read an argument for treatment which Nancy Iannone posted on Down-syn.  First Nancy wonders at the accusation that treatment of mental disability means that the parent somehow rejects the child:

On the issue of treatments/ “cures”: I love my daughter and accept her fully. Absolutely. But treatment for cognition based on solid research does not equate to rejection of her. I do NOT understand that leap.

Then Nancy pointed out that this standard of non-treatment is not applied to any other health issue in Down syndrome.

My daughter has DS, and because of DS she had a hole in the middle of her heart which was repaired. We risked “going under” for open heart surgery, and took the risk (however small) that she’d die on the table, because the alternative was severe illness compromising quality of life and probably death.

Treating the heart does not imply non-acceptance.

My daughter has DS, but due to my antibodies she was born with congenital hypothyroidism, and continued to be hypothyroid due to Down syndrome. We risked very little (heat sensitivity being the only side effect so far) to treat her medically to avoid (among other issues) severe cognitive impairment which would not have been reversible had she not been treated as a newborn.

Treating the thyroid does not imply non-acceptance.

My daughter has DS, and because she has DS one of her tear ducts is too small. Her doctor suggested a minimally invasive surgery to expand the tear duct. The risk was “going under” and the benefit was reducing the risk of infections due to an improperly functioning tear duct (another non-important benefit was the aesthetics of ending excessive tearing). It failed, and we risked surgery again for the same benefit. It failed, and we risked a more invasive surgery. The benefits remained the same and the risks of going under – plus a longer recovery, stitches, a scar, and more pain – increased.

Down syndrome was a possible cause of or probable contributing factor to Gabby’s bout with pneumonia, her frequent sinus infections early in her life, her bouts with bronchitis early in life, her susceptibility to colds, and (due to her small size and low weight) her hospitalization for a stomach virus.

Treating blocked tear ducts or infections does not imply non-acceptance.

If I’m reading correctly, no one questions the value of treating any of these issues, and we all understand that we must weigh the pros and cons of treatment based on individual circumstances.

Parents happily weigh the risks and benefits of a host of medical interventions for their children with DS, and no one questions whether they accept their child.  But, somehow, when the treatment is for medical issues related to the brain, the standards of judgment change.  Nancy exposes the fallacy in that judgment:

The problem seems to lie in treatment for cognition if one exists. It seems like that is a trigger for “non-acceptance.” I believe a solid treatment for the improvement for cognition will exist within a decade so I do believe that this will be a question for us all. Having already treated my daughter to avoid severe cognitive impairment, I will treat cognition issues again if the situation warrants. Like any other treatment such as her four surgeries and her thyroid medication, I will weigh the pros and cons, and the analysis will have nothing to do with MY acceptance of my daughter. Instead, I will focus on the benefits the potential treatments will provide for her and the cost (risks & side effects).  Recognizing the benefits, such as greater employability, increase in communication skills, greater memory retention, reducing the chances for Alzheimer’s etc. – these benefits do not imply a lack of “acceptance” on my part.

If that treatment involves turning off the expression of certain genes, by the time I will look at the question, certainly the possible impact (on personality, on “DS-ness”) will be a known factor based on trials. I will weigh those costs and benefits when the time comes, and I’m sure that for me changing “who she is” will not be a likely step.

Nancy posts as Reader1234 on the Down Syndrome Pregnancy board.