NeuroCartographer

How do you feel about how the doctors handled the situation right after Lily’s birth (in terms of things like their knowledge, their ability to inform you, support you, etc.)?

I want to thank you and admire you for the strength you have found to share your experience like this. As a medical student years ago, I had to counsel some families with this and related disorders, and the experience has never left me. One of the most heartbreaking aspects on my end was my inability to be able to give the families enough information about how they were to survive let alone thrive with this shocking change to their expectations for their new family. Sharing your experience and creating Lily’s List are invaluable. I am sorry you were dealt these cards, but you have created an amazing tribute to Lily and are helping so many people. Just wanted to send you love from an internet admirer. ❤️

That is great to hear! Unfortunately, that seems like the more unusual approach in many places. I could not agree more with your sentiment that the quality of life is crucial and life can be rewarding, even if it is short, and I wish more doctors were trained to think like that.