Dr. Sheri Fink:
Well, I spent time with children like Noah and other children. And I think one of the big changes was also research into the families themselves.
I think there’s often an assumption that, if a child is severely disabled, cognitively disabled, in this case, most of these children or almost all of them are nonverbal, that these deep questions of what is a worthwhile life or is that child happy, for example.
And what is incredible about these kids is that their families talk about them as being a very happy disposition, that they communicate, that they engage. So, whereas they might not have the words that we have, they might — they still can meet developmental milestones. They laugh. They hug their families.
It sounds like such a scary diagnosis, something so profound that could affect the child’s health and their ability to develop. But, in fact, there’s something so beautiful about the devotion of the families that do decide to try to offer their children the best chance of surviving.
And, also, I think we really need to respect families who say that this doesn’t meet their values or that they feel like, in their child’s case, that that wouldn’t be the right choice to choose heart surgery, for example, to repair the heart or to choose a ventilator, a tracheostomy.
So, to me, it really comes down to speaking to different families who’ve made different choices and understanding and empathizing with all of them and also just being blown away and impressed by the love that all of these families that are faced with a diagnosis that is unexpected and, of course, very, very difficult, that they go on and can have amazing lives when they’re offered choices.
So that is my big takeaway.
