Not Alone

When we received Julia's diagnosis of trisomy 18, we did not know anyone who had experienced this. We did not know where to turn. This was 3 years ago. In that short time, trisomy communities across the US and the world have become much more visible and accessible.

Sometimes families facing this diagnosis in their unborn child or newborn child are not ready to connect with other families. It is such an overwhelming diagnosis and we all process the information at our own pace. I remember finding the SOFT page and ordering the books on caring for a child with trisomy 18. I opened the books when they arrived and promptly put then away. I was not ready. Julia was 3 weeks old. Looking ahead by weeks, months, or years felt so beyond what I was capable of imagining. Yet these books and the SOFT website told me it was possible. And if it were possible, there must be other families out there living with this...

For months I was so focused on Julia's day to day needs that I did not seek out the trisomy community. I did not know I would find so many living children with trisomy 18. When a fellow trisomy mom found me and directed me to the active online communities, I was amazed. My hope swelled. We were not alone.

Since then I have had the opportunity to meet several trisomy families in person and to interact with hundreds online. Some, like us, have had to say goodbye to our little ones. Others have children who continue to defy the odds and write their own stories.

The parents on these boards are a tremendous resource of information about birth plans, living with trisomy 18/13, locating doctors/hospitals, in home nursing care, various therapies, medication questions, and grief support. Questions are welcome!

The trisomy diagnosis and journey are not easy. The journey can feel so very isolating. Joining together with other families, though, allows us to share the joys and the fears, to celebrate the milestones and to mourn the losses among friends who understand every step of the way. 

If you or someone you know is facing a rare trisomy diagnosis, here is a list of parent support groups I have found helpful:

Facebook Groups

 (these are closed/private groups that those with a diagnosis can be added to)

T18 Mommies 

Trisomy Families

Trisomy 18 Foundation Parents Connect

Trisomy Angel Parents

You can read stories about children with Trisomy 18/13 at the following sites:

Support Organization for Trisomy

Trisomy 18 Foundation