Last year, March was the month that we announced, dressed in green, that we were expecting again. This year March represents something that is much bigger than us and our story- it is the story of every family that has been touched by Trisomy, the story of babies, like Locke, who are dear, and special, and rare.
In the last year we have connected with so many families that like us, were the 1 in 10,000 statistic. I would log onto the facebook support group and scroll through the feed just crying. So many, “we just returned from our ultrasound”, “we just got our diagnosis”, “we just said goodbye”. Over and over, my heart would shatter and I would think I know just how you feel. They are all searching for the same thing.. a cure, a remedy, someone to tell them that it was all just a bad dream. But there, among the fears and confusions there is something else you will find if you look hard enough.. undeniable, unconditional love. A universal agreement that blessings flow from these short, sweet lives. A connection of people who understand Trisomy better than any statistic you can find.
The purpose of trisomy awareness month is just that- to make others aware. Trisomy means “three”- individuals with trisomy have three copies of each chromosome instead of two. There are many kinds of trisomy- the most common being 21 (down syndrome), 18, and 13. Our Locke had Trisomy 13.
So- what is Trisomy 13?
- the result from having three copies of chromosome 13 in each cell in the body instead of the usual two copies
- occurs in 1 in 16,000 live births
- most cases of trisomy are thought to be a “fluke” that occurs when cells divide at conception, not hereditary, although it can be passed on if you carry a translocation
- 80% have full trisomy, meaning that every cell in the body is effected (Locke had full)
- traits are often picked up in ultrasound because there is a very recognizable pattern of physical features such as cleft lip and palate, extra fingers or toes, brain and spinal cord abnormalities, heart defects, hair whorls due to irregular brain development, kidney and other organ abnormalities and many, many others
- survival rate is very low, less than 5% make it to their first birthday, and many do not live beyond the first days of life due to central apnea, lung development issues, feeding and reflux issues
What can you do?
The day you receive a hard diagnosis is, in my opinion, one of the worst days of the entire journey. Allowing myself to let go of the vision of our family that I had imagined took time. Once I accepted that things were going to be different I realized that making his life full was in turn making our, and everyone around our lives full. There is truly so much beauty to be found in this journey.
Talking about the life of a lost child is one of the greatest gifts you can give a grieving parent. There is nothing that makes Locke’s memory more alive than hearing about how he is on the minds and hearts of others, still.
I can’t tell you how many times we heard “I just didn’t know what to say”. That may be the case, and thats okay. But say something. Even if it’s just “I’m here”.
Educate and advocate.
Understanding what trisomy is has been a solid foundation for me. To make the best decisions for Locke we educated ourselves as much as we possibly could about each of his conditions. Being a voice for hard things, like trisomy, and loss, can change someone’s decision to carry to term and can be the light that they need.
Nothing in this life is permanent. Love well. Squeeze your babies a little tighter, be a bit more patient, and don’t wish away your time with them.. it is so precious. When you think to complain about something like the extra five pounds you could loose, or your lack of sleep… please remember how many empty arms there are around you. Please remember how fragile their hearts are.
If you, or someone you know, finds themselves facing a difficult diagnosis, reach out. You are not alone.