3/18/20 Trisomy 18 Awareness Day

Today is Trisomy 18 Awareness day because there are three chromosomes (rather than two) of the chromosome 18. 3/18

Do you know what trisomy 18 is?

I thought I did when I was a med student and resident. I thought I did until I found out that my daughter had trisomy 18.

Babies with trisomy 18 may not live to be born alive, or they may have very shortened lives with delayed milestones and multiple medical complications that can involve the heart, the lungs, the kidneys.

And, for most of my training and beyond, it is STILL considered or called ‘incompatible with life’. Think about those words. INCOMPATIBLE with life…even though there are kids with trisomy 18 who are born alive, who live happy lives, who make a difference in our lives.

My Macy was born alive and perfect and full of love.

For me:

Trisomy 18 is brave two year olds, lots of end-of-the-night tears, the coming together of my family, the always steadfastness of my husband.

Trisomy 18 is the hole in my heart, the empathy I share, the thing that changed me most as a doctor, as a wife, as a mother, as a person.

Trisomy 18 is my Macy Button, teaching me with her whole (AV canal defect and double outlet right ventricle) heart to love with my whole heart. And what it means to love and be loved unconditionally.

As always, thank you to my Macy and to my wonderful family. xo

For more information and for support groups, please visit trisomy18.org.