Don’t count Down babies out in the womb

A friend of mine – who is very wise – said this once. How true we have found this to be when we became parents of two beautiful girls, who both happen to have Down syndrome, and how we wished more people opened their hearts to the unexpected.

But it seems that today, many people struggle to adjust to this concept. Now that we are used to control most everything in our lives, the perfect house with the perfect temperature, the perfect job, the perfect car that navigates itself, is it surprising we want the perfect offspring to complement our perfect lives?

So what happens if we decide that a child will make our lives even more perfect, and three months into our pregnancy we hear the baby we were expecting is not going to be perfect?

While riding an emotional roller coaster, these parents are under enormous pressure to make "the right decision." Vulnerable, pressured by time and with only limited or biased information as guidance, given by medical staff that usually has no experience with raising a child with a prenatal diagnosed condition, most parents sadly choose termination.

They do this, never knowing there is a world of hope, support and resources out there. In spite of tireless efforts from support groups, their information pamphlets rarely reach prospective parents at the time they need it most. It is a sad but true statistic that over 90 per cent of babies diagnosed with Down syndrome are aborted in North America today. That percentage is comparable for children that are diagnosed prenatally with other conditions such as spina bifida, cystic fibrosis and dwarfism.

But is termination really an acceptable solution to many of these women? A recent Norwegian study found that women who terminated their pregnancy are much more prone to develop depression or anxiety. Maybe we could call this a sort of PTS or "pregnancy termination syndrome."

I wonder if having PTS will make life more or less perfect than Down syndrome? Maybe we should all think before we act. If we try to become pregnant, there is a chance we will conceive a child that is not perfect in the true sense.

Maybe this child will have a prenatal diagnosis, and maybe this child will be diagnosed with a condition later in life. And maybe this child is perfect in the true sense, just not like we expected. Should we as parents not simply love our children for who they are?

I, for one, am glad to have opened my heart to the unknown, the uncontrollable and unexpected. I am rewarded every day with hugs and kisses and smiles from my two beautiful children. I am rewarded with challenging the norm of what is called "perfect" and celebrating minor (and major) victories. I am rewarded by the realization that a perfect life is so much more than superficialities.

Our lives are not perfect anymore. Our lives have become better than perfect: they are raw, pure and full with unexpected rays of sunshine.

The Nova Scotia Down Syndrome Society has started an online petition to call for a Prenatal Diagnosed Condition Awareness Act. This Act could manage the set-up of information and educational programs that will help create awareness before the choice to undergo prenatal testing is made or even before a woman becomes pregnant. It also ensures that prospective parents are given a fair choice which includes balanced information about the diagnosed condition of their child.

Renate Lindeman is president of Nova Scotia Down Syndrome Society.

Source: RENATE LINDEMAN, thechronicleherald.ca