Monday, March 3, 2014

Information is Critical.

When I found out that I was pregnant with a child with Down syndrome, I was offered support that included connections to other parents, books, and pamphlets.

While we were asked what our plan was if the testing revealed a chromosomal difference, termination was never presented as a more favorable option than the choice we obviously made - to raise our daughter, regardless of her chromosomal makeup.  Our experiences with doctors were generally positive, but anecdotal evidence (and probably real statistics somewhere) suggest that this is not the normal patient experience.

On Friday night, Ellie and I got to meet my online friend Stephanie and a whole bunch of other cool people at a dinner coordinated by the National Center for Prenatal and Postnatal Down Syndrome Resources.

Stephanie is one of the brilliant minds behind Diagnosis to Delivery, a book written specifically for families with a prenatal Down syndrome diagnosis who are awaiting the birth of their child.  It was published within weeks of our diagnosis, around the time the site www.downsyndromepregnancy.org launched. Those resources are incredible, and I recommend them strongly to anyone living in that tough time between knowing your baby will be "different" and holding that child.

Even more strongly, I recommend getting to know Stephanie and the other folks who have worked tirelessly to ensure that the individuals delivering a Down syndrome diagnosis are presenting the reality of life with Down syndrome, rather than making value judgements or assumptions that life with a child with Down syndrome, a child like Ellie, is miserable.

They've published a booklet called Understanding a Down Syndrome Diagnosis that is honest.  While it covers the realities of life in the year 2014 (including termination as an option and mentioning medical and cognitive challenges people with Down syndrome face), the booklet primarily explains the opportunities available for kids with Down syndrome.  Stephanie shared with us something that she'd shared with genetic counselors.  I'm less eloquent than her, but I'll try.  Sixty years ago, a parent with a new baby with Down syndrome would be told that their child would not learn to read or write and should live in an institution. Today, parents are told that their babies will probably read and write, probably go to school with their peers, and probably will be able to live semi-indepdently and work, and even have a post-high school experience.  But the extra chromosome and genetic makeup of people with Down syndrome has not changed.  Only opportunities and medical advances have altered the landscape so dramatically.

The national organization for genetic counselors has determined that this booklet is appropriate for families who are in the decision making process.  And while I knew that regardless of my child's diagnosis, Ellie would becoming home with us, not everyone undergoes genetic testing with their mind made up.

Since more and more women are having prenatal genetic testing thanks to non-invasive tests, more women will be getting that call.  "Your baby has Down syndrome."

Since a blood draw feels like no big deal in pregnancy compared to the highly invasive CVS testing I experienced, more women will be getting that call without having been forced to consider their next step.  When you have a major medical procedure, you think a lot.  If you are pregnant, a blood draw is no biggie.  I lost count of the times my blood was drawn and the reasons.

Understanding a Down Syndrome Diagnosis helps families understand the opportunities that exist for their unborn child, so they can make a decision with all the information.  The more families understand the reality of Down syndrome, the better.

Check out some of these resources:
Brighter Tomorrows for parents.
Brighter Tomorrows for medical professionals, who may be delivering a diagnosis.
Lettercase.

Many of my fears about Ellie were based on ignorance.  Many of my fears were calmed by the resources provided by the team at Down Syndrome Pregnancy.



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