I was so fortunate in that I purchased my older daughter, Kayla's, life ins policy in November when she was 6 months old. My agent had recommended it after I asked why on earth someone would purchase life ins on a baby. She was dx with CF at 14 months old.
When I was about to give birth to my second daughter, Hannah, my agent had me sign all the paperwork so that when she was born, he could submit her policy. We did NOT know whether she had CF or not. We just didn't want to take any chances. Our ins agent was called within minutes of Hannah being born, and the agent paid the first year premium as a gift. She was dx at 1 month old.
So both of my girls have life ins. I am so thankful my agent recommended it. It was really in thought of if they were to get cancer of something...not CF, of course! But at least there will be something down the road for them.