Trisomy 18 Awareness Day

(Well I had hopes to have more time to write today's post but I didn't. So this is actually my first 'test' post using my iPhone app. )

I first learned of Trisomy 18 in one of my high school science classes. It was lumped together with the other two common trisomies, 13 and 21. And of course in any mention of the three trisomies 13 and 18 are quickly passed over as usually being fatal and less common with emphasis being placed on 21 because it is most common and known, because it is Down Syndrome.

Little did I know that about 10 years later I would have a child with Trisomy 18. Naively I thought that healthy young couples don't have to worry about their children having one of the trisomies. I thought that was what happened to unhealthy or older couples (terribly naive and I am embarrassed to admit). But as I learned in December 2009, anyone can have a Trisomy 18 baby, including me.

We were 'lucky' to give birth to Hailey and blessed to have the time we did with her. Many Trisomy 18 babies die in utero or during birth and if not then within the first year. I hate that the phrase used is that they are "incompatible" with life...

It was difficult to make decisions for Hailey's care once we learned she had Trisomy 18 and we never knew when her last breath might be.... One of our greatest struggles we face today is of we did enough... What if we had chosen this surgery or that procedure and so on instead of opting for no medical interventions... She wouldn't still be alive, unless it were a medical miracle... But could she have lived longer? And when did we stop believing in miracles?

But without going further... Today is Trisomy 18 Awareness day... All I can do is share about it and Hailey... For more of my posts on Trisomy 18 look them up under their label on the left menu.