Table 3 Fetal Role in Decision-Making

Example 1

Then that’s something we would come and we’d talk to you and we’d say, hey listen, this is where things are at, despite all intensive care that we can offer, your baby, you know, we can’t get things where we want, and it’s basically, that’s the sign, that’s your baby telling us that, you know, just the lungs are too premature (Consult 41; lines 929–934).

Example 2

If-if find that we are starting resuscitation and that he’s just not responding then we come to you and say “you know he’s just not responding. I think he is telling us that he wants to be with mom and dad.” And literally that’s what happens we stop what we’re doing and we bring him to you, and you can be a family for a very short period of time (Consult 145; lines 276–278).

Example 3

Because sometimes, babies tell us and, ultimately, they guide the decision-making, and they tell us my body’s not ready in this world and you’re doing everything, but I’m not responding; I’m not getting better (Consult 949; lines 454–456).

Example 4a

And the other thing I’ll tell you that, you know, sometimes I don’t, I don’t know what moms and dads necessarily feel pressure alleviated, but sometimes it’s not even you making the choice; it’s your baby (Consult 393; lines 213–214)…Sometimes after, you know, the first couple days, we have more information regarding bleeding or infection and, or his lungs are really not working for him, and families make the decision to listen to the baby and, and stop the support (Consult 393; lines 225–227).

Example 4b

Your decision, whichever it is, is the right answer, um, and that’s something we just want you to know in your heart and your head, whatever you decide is the right decision, and we’ll support you. And if your baby, he, if he tells us differently, we’ll, we’ll let you know (Consult 393; lines 417–419).

Example 5

I think you know one of the challenges of what it can feel like when I come in or when one of my colleagues comes in to talk to you is that you’re making a decision whether your child may live or die. And I, my hope is that we can somewhat reframe that question and not take away a little bit about the question of your child is gonna make the decision. He or she is the boss here. We are kind of ah their, his or her soldiers, and we’re looking to make sure we’re all aligned and, and listening to your baby. And to not feel responsible of that decision because he or she is guiding it. And it’s just us listening (Consult 582; lines 345–356).