Wednesday, March 18, 2015

Trisomy Awareness

On more than one occasion I have received comments like these from various doctors, both while pregnant with my daughter, Joan, and since losing her to Trisomy 18:

Those babies don't survive.

Your baby will never be normal.

Your baby will never be able to communicate with you.

Your baby won't be able to eat normally.

Your baby will never smile at you.

I distinctly remember a conversation I had with a doctor not long after we lost Joan.  When I told him that I had a daughter that passed away from Trisomy 18 at full term, he asked if I knew about the politician, Rick Santorum, who had a then 4 year old daughter with Trisomy 18.  For a second I was hopeful, thinking he was not going to be like other doctors.

Until he continued with, "She doesn't have full Trisomy 18.  It must be a less severe partial trisomy.  Babies with full Trisomy 18 don't survive.  You know your baby would not have been like a normal baby."

To this doctor, and many others... Bella Santorum is now 6 years old, living with full Trisomy 18.  Bringing joy to her family and many others.

While survival statistics are bleak for children with disorders like Trisomy 13 and 18, some do survive and thrive.  Their physical and intellectual disabilities should not determine the value of their life.

Let's raise awareness together.

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