Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Friday, March 18, 2016

Why Trisomy Awareness Matters

March is Trisomy Awareness Month, and today, 3/18, is Trisomy 18 awareness day. 

Trisomy 18, also called Edwards syndrome, is a chromosomal abnormality. 
A "trisomy" means that the baby has an extra chromosome in some or all of the body's cells. In the case of trisomy 18, the baby has three copies of chromosome 18. This can cause many of the baby's organs to develop in an abnormal way which leads to various health complications.  Trisomy 18 is the second most common type of trisomy syndrome, after trisomy 21 (Down syndrome). About 1 in every 5,000 babies is born with trisomy 18. As of now there is no cure for trisomy 18. Treatment for trisomy 18 consists of supportive medical care to provide the child with the best quality of life possible.
Since there is no cure and no way to prevent trisomy 18 from occurring, why do we seek to increase awareness? As a trisomy parent, I want to share three reasons why trisomy awareness matters.

First, awareness is important to show that we are not alone. Wherever you are as a trisomy parent or family member, someone else is walking that same path. Trisomy 18 is an overwhelming and little known diagnosis, and it is easy to feel isolated. Most of us do not know anyone else with this diagnosis when we receive it. Where do we turn for advice when even our doctors and nurses have seen only a handful of cases, if any? With increased awareness, we can find and turn to a community of people who have been there and who are there. My experience in having a child with trisomy 18 changed dramatically once I found the trisomy community. I was able to connect both in person and online with fellow trisomy parents and trisomy kids.  I found hope, understanding, and resources that bettered my daughter's life and my own. 

The second reason trisomy awareness matters is to increase medical support of the babies, children, and adults who are living with trisomy 18 as well as of the expectant mothers carrying a child with trisomy 18. Life expectancy for babies and children with trisomy 18 is low, with approximately 10% surviving to their first birthday. Because of this, interventions to extend life and improve chances at life such as cardiac surgery, may not be considered or offered. However, with increased knowledge and awareness, a case can be made to a surgeon or physician based on the experiences of other families in this situation. Alone, we struggle to be heard, but together, we have a voice. 

Finally, by raising awareness of trisomy, we can increase understanding of what it is like to live with a medically fragile child, such as those with trisomy 18.  I had no idea what having a medically fragile child really meant until my daughter was born with trisomy 18. There are the many doctor and therapy appointments, the increased worries about even a simple cold, the exhaustion from increased care needs, and the added strain of living with the unknown. However, even with these added difficulties, trisomy families are grateful for the time we have. We rejoice in little things and celebrate every hard earned milestone achieved. We strive to give our child and our entire family a life as full as possible in spite of our limitations. 

Awareness brings community and hope. Awareness brings better medical support. Awareness brings understanding. Thank you for reading this and for increasing awareness. 

For more information about trisomy 18 and for support, see the links below. 

Facebook Groups- these are closed groups that accept parents of a child affected by trisomy:
Rare Trisomy Parents
Trisomy Families
Trisomy Angel Parents