These are resources that I found helpful in my journey with Caroline and Trisomy 13.
1. There are a few organizations in support of families facing a trisomy diagnosis. The organizations are mostly made up of parents of the few children who are long term survivors. However, I found these websites helpful because the family stories were very informative and helped in our decision making as we decided how aggressive we would be with intervention.
Trisomy 18 Mommies (facebook group)
2. I found this page very helpful for creating Caroline’s birth plan.
3. Now I Lay Me Down To Sleep is a charity where photographers volunteer their time to take pictures of children who are stillborn or have a poor prognosis. Our pictures from our NILMDTS photographer are priceless.
4. A Heart to Hold sent us a heart that is Caroline’s weight, which has brought us much comfort.
5. We love our Caroline bear, a custom teddy that is Caroline’s weight. We plan to use the bear for family pictures to represent our precious Caroline.
6. We had a rosary made with flowers from Caroline’s funeral.
7. This organization has been helpful as we navigate our grief.
8. These websites have also been helpful as we navigate our grief.
Now I Lay Me Down To Sleep (facebook page)
All That Love Can Do (facebook page)
All That Love Can Do ❤ (facebook group for parents carrying to term – I wish I had found this earlier)
Trisomy Angel Parents (facebook group)