What Didn't Help
One thing that didn't help was people asking us for details about Trisomy 18. We sent out emails giving the diagnosis and prognosis, and making the severity of it very clear, with the expectation that people would take the initiative and find out more themselves. In a number of cases, people did not pick up on this and asked for details - which was the last thing we felt like giving at the time.
Another problem we found was that people wouldn't listen. They would hear what we were saying and then still come out with questions like: "So when will she get better?"
As parents, we had to learn to also be gracious to well-meaning, but ill-informed people and just patiently explain again. On occasions, this became too difficult for us and we had to cut some conversations short and walk away, as politely as possible.
Ultimately, you need to do what is best for you, but have the grace to see past inappropriate and ignorant words, and see to the heart of the person saying it.