NOTE: Daniel and Kelly speak to this question on Episode #16 of The Abel Speaks Podcast. You can listen on Apple, Spotify, or your app of choice.
Daniel Crawford:
Welcome to The Abel Speaks Podcast, where we speak to commonly asked questions by parents who have received a life-limiting diagnosis for their child. We’re Daniel and Kelly Crawford, and we’re glad that you’ve joined us.
All right, welcome to The Abel Speaks Podcast. Today, we are going to stay in the medical realm, and the question is, how and when should I talk to the NICU? N-I-C-U, neonatal intensive care unit, that is a team at your hospital. Kicking it to you, how to think through all things NICU team?
Kelly Crawford:
We typically encourage families to schedule an appointment to meet with their NICU between 24 to 28 weeks pregnant, and just allows families to meet some of the providers at the hospital as well as just to communicate what their wishes might be for their child’s birth, and also to be able to discuss any interventions that they might be interested in and just to get a better feel for what the hospital feels comfortable with in that realm.
We provide a medical questionnaire to every family that we serve through Abel Speaks, and those are just questions that we have found to be really helpful for mom and dad to discuss and figure out where they land on some of these topics, as well as give them some language and some questions to ask to the NICU team just to make sure that they are all on the same page.
Daniel Crawford:
That’s good. That is a resource that we’ve built that is really specific in terms of, hey, talk about these things as mom and dad and then talk about these things with the team. “Hey, here’s how we’re approaching it,” and trying to get on the same page. And so, more than the specifics of here’s what you should exactly say to them and ask them, we do try and counsel just in terms of, “Hey, how do I approach that meeting as a whole? As we’re presenting ourselves and presenting this information, what are some goals I should have in mind that would just be a win for that meeting?” What would you say to that?
Kelly Crawford:
I’d like to start by just saying that those meetings can be really difficult be at, to communicate what your wishes are. So, just as a disclaimer that heading into that meeting, it could be a really challenging day. And so, we usually encourage families to take a trusted friend or family member to go with them just to make sure that they’re hearing things correctly and just to make sure that the family’s wishes are communicated in a clear and concise way. That’s just an encouragement that we usually tell families to consider.
Daniel Crawford:
Yeah, like a note taker as well, just so I can be purely focused on the conversation and not have to capture everything that they say. That’s a great recommendation.
Kelly Crawford:
And then in terms of heading into the meeting, we tell families that it’s usually helpful to actually just put words on, “Hey, we are not crazy. We understand the diagnosis, we understand the severity of the diagnosis, and we want to work with you, medical provider and family, as a team and as a unit. We really respect your wisdom and your education and all of your experience, but also, we want you to respect us as this baby’s parents and that the baby has been entrusted to us and just ask that you would also trust us and that we can work together as a team to come up with a plan of care that we all feel comfortable with.”
Daniel Crawford:
Yeah, that’s good and does establish, it’s sad that it needs to be established, but that baseline of… Because it’s just altogether not very common for these diagnoses, where parents continue the pregnancy. And then, you get into all the worldview differences that might be present there. Without going down that rabbit trail, it sadly is worth establishing, just hey, looking them in the eyes humbly and clearly and just saying, “We are not in denial. We are aware of and have educated ourselves extensively on what our child is up against, and we’re committed to trying to make the best decisions. We know how to make one step at a time and we really value and want to work together to that end,” while emphasizing the dynamic that you just laid out is all really helpful. Any other final thoughts on this whole NICU conversation?
Kelly Crawford:
No, not really. I think it is a challenging hurdle in the pregnancy, but also one that I think leave parents feeling like they are on the same page hopefully with their providers. Also, it allows families that if you leave that meeting and you’re like, “Oh, I don’t think that we’re on the same page,” it gives you enough time to choose to switch providers or switch hospitals if that feels like the right thing to do for your family.
Daniel Crawford:
I think a good bottom line thing to just say is, “Hey, we want to know all of our options at every step of the way and the pros and cons of each, and then we will make the decision we think is best. We also reserve the right to pivot off of that if we learn something that’s different. We want to have a plan, but we also want to have a loose grip.” So, all of that said, there’s a number of different medical teams and niches on this journey. The NICU is surely to be one of them, and so we hope this was a helpful just introductory conversation. That wraps up this episode of The Abel Speaks Podcast.
Hey friends, thanks for listening in. We hope this content has been helpful. At Abel Speaks, we exist to support families who have chosen to carry a child with a life-limiting diagnosis, and we want you to know that the foundation of that support is rooted in relationships. And so, if you’re a parent in this circumstance, by all means, continue listening in, but we’d really encourage you to reach out by sending an email to support@abelspeaks.org. Again, our heartfelt prayer is that this episode has served you in some way and that we might have the opportunity to serve you further in the future. The Abel Speaks Podcast is produced by the team at Tarnow and Company and mixed and edited by the team at Sound of a Rose.
