March 18th is Trisomy 18 Awareness Day. I don’t need to be made aware of Trisomy 18. I was made aware of it in August of 2011. I also don’t think the vast majority of the public needs to be made aware of it. Like a lot of other medical conditions, you don’t really know about Trisomy 18, or its similar conditions, Trisomy 13 and Trisomy 21, unless it comes crashing into your life. But, I do support the Trisomy 18 Foundation. And I do love and admire the people in the world who are out there living with Trisomy 18. And there are people in the world who are out there living with, and caring for those living with, Trisomy 18. So I do find it necessary to educate others on the condition. That’s what I call it, a condition.
Trisomy 18 is a condition caused by an error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair of number 18 chromosome, an extra chromosome 18 results (a triple, hence tri) in the developing baby and disrupts the pattern of development in significant, life-threatening ways, even before birth. A Trisomy 18 error occurs in about 1 of every 2500 pregnancies in the United States, and 1 in 6000 live births. The numbers of total births is much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down Syndrome, which is also caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with medical complications that are potentially life-threatening in the early months and years of life. Studies have shown that only 50% of babies who are carried to term will be born alive, and only 10% of those babies will live to see their first birthday. Most of the babies who survive are girls.
As I mentioned above, there are people living with Trisomy 18. Perhaps one of the better known children living with this condition is one-time Republican Presidential hopeful Rick Santorum’s daughter, Bella. Bella turns eleven this year. She is a beautiful young lady, with well-equipped parents who have made it their mission to see that she lives a happy and adventure-filled life.
At the risk of being political, I will stop there. As the Santorums and I have little in common, other than having a daughter who was diagnosed with Trisomy 18, but please be aware that not all people in this situation, or with babies who have life-altering disabilities, are capable to care for, and provide for, their children in such an amazing way. Just be considerate.
I’ll end with a link to the story that I wrote about our daughter Lydia. I suspect it will tell you all you need to know about our journey. As always, I welcome comments, questions, and thoughtful discussion on any topic I address. But remember, above all else, there are people in the world who are battling things you can’t even conceive of, things you do not know about, things you are not even slightly educated on. Be kind to all you meet.
Lydia’s Story: http://mudseasonreview.com/2018/10/nonfiction-issue-40/