When we first received James' diagnosis, it was one of the first sources of information that we found and it did a good job of presenting an unbiased presentation of the options and preliminary information. There are better and more detailed places that offer more information on the care and keeping of trisomy 18/13 kids (SOFT), but the trisomy 18 site was our first point of contact with our new reality and I am happy to support its continued operation. They offer legacy pages where families can memorialize their children and I poured over those sites in the beginning attempting to figure out the overall prognosis for my little boy. I hope that someone can get something useful out of James site.
Other resources that we have found to be amazingly useful:
Hospice and Palliative Care of Charlotte "Kids Path" program has a Perinatal hospice program. Although we were not lucky enough to get to use their home hospice programs, my discussions with their director gave me amazing comfort in knowing we could get what we needed. She also helped me put together our birth plan.
Now I Lay Me Down to Sleep - this is a national organization dedicated to helping families of stillborn or early infant death babies by providing them with a professional photographer to take pictures of their previous child to keep forever. We were lucky enough to work with Faith Massey who is our area coordinator in the prenatal phase. She was, unfortunately, out of town on the date of our induction. However, she went above and beyond and found us another photographer for that day. Ron Randle of Love Shutter photography was kind enough to step in on the day of our delivery and was able to make it to the hospital earlier than expected to capture pictures of our baby before his death. Pretty amazing people and I cannot wait to see the pictures, due in any day.
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