Tough News

My pregnant wife and I received some tough news this week. Our baby inherited her NF1. We're still working through our feelings and learning as much as we can from the genetic counselors and NF specialists in our area—as well as from the CTF—before making some hard decisions. But I’d really appreciate this community's feedback on some questions that are jangling around in my head. Good news is that mom and the baby seem to be doing great.

For those of you who have NF1
My wife has given me lots of information about her experience, but since NF1 is so unique for each person, would be interested in your journeys and thoughts.

• What has been the hardest part for you?
• Do you feel it has hindered you in small or giant ways? Socially, academically, in relationships?
• Has it been difficult to get care?
• How many hours, on average, would you say you spend getting check ups in a year?
• What things did your parents do to provide you emotional support?
• What did you wish they had done or understood?

For parents of children with NF1

• Any advice on questions to ask the genetic counselor? I have scores of them, but want to be as comprehensive as possible since we only have an hour with the specialist.
• Advice in general?
• And a big one that is completely without judgment: if you had the opportunity to terminate the pregnancy, would you have?

Thank you all for sharing your experiences on this subreddit. Learning there's a community for NF was a welcome sight.