Please Keep Our Baby Comfortable: An Anticipated Death in the Newborn Unit

This is a video from the Pediatric End of Life Series from CS Mott Children's Hospital Pediatric Palliative Care Team. Other videos and materials from the collection are available at https://open.umich.edu/education/med/resources/palliative-care/2010.

This video is shared under a Creative Commons Attribution 3.0 License: http://creativecommons.org/licenses/by/3.0/

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[00:00:07.0]Doctor: Hi Mr. and Mrs. Franklin, I'm Doctor Rod Jones.
[00:00:10.0]I'm the pediatrician that will be here all night to make sure Logan is comfortable, and to make sure we're doing everything for him.
[00:00:16.0]How do things seem to be going so far?
[00:00:20.0]Father: He seems pretty comfortable so far, he's had his eyes open for about as long as 20 minutes...
[00:00:26.0]Julie, what were you worried about?
[00:00:28.0]Mother: Um, Doctor, he's not really taking to the breast very well, I feel like he might be hungry though, and...
[00:00:33.0]I know he's not going to last very long, but I don't want him to starve.
[00:00:37.0]
[00:00:43.0]Mother: ... I don't want him to starve.
[00:00:45.0]Doctor: It's very important to understand that starving someone is actually withholding food from someone that wants to eat,
[00:00:50.0]and is able to do so. So if Logan wants to drink, we'll encourage him to,
[00:00:55.0]just like Courtney said. So how about we try putting some sugar-water on a pacifier and see if he'll take that.
[00:01:01.0]Nurse: A little bit of sugar water on there, just a little bit, just for the taste.
[00:01:07.0]Mother: Ok..ok.
[00:01:10.0]Nurse: Looks like he likes that!
[00:01:11.0]Mother: Yeah!
[00:01:12.0]Nurse: If he does okay with that, then we can progress on and offer him a bottle and just go, we'll just play it by ear. Ok?
[00:01:20.0]Doctor: Why don't we try that? Is there anything else you're concerned about?
[00:01:27.0]Father: How long do you think he'll last?
[00:01:29.0]
[00:01:35.0]Father: How long do you think he'll last?
[00:01:38.0]Doctor: (Sigh) ... I... I wish I could predict that for you. Most babies with Trisomy 13 don't even make it this long.
[00:01:44.0]In our experience, those that are born and that make it the first few hours
[00:01:49.0]generally just happy to be held, and loved.
[00:01:53.0]Right now, Logan's heart rate and breathing are very regular.
[00:01:58.0]But I wouldn't be surprised if he has some periods of holding his breath for a long time,
[00:02:04.0]gasping for breath, or even periods where it seems like he's breathing intermittently.
[00:02:08.0]But, I think over the next few hours we'll have a better indication of if we'll be able to maintain this regular heart rate and breathing.
[00:02:15.0]However, if he seems to be uncomfortable at all, we have some very good medications that can make sure he doesn't feel short of breath.
[00:02:22.0]Okay, so, I'll be back in a little bit and Courtney will page me if there are any changes in his condition, and feel free to get in touch with me
[00:02:28.0]if you have any concerns. Okay?
[00:02:32.0]Father: Okay. Thank you.
[00:02:34.0]Nurse: Alright. Let's see what he does with the bottle..
[00:02:38.0]I'll take the pacifier.. Here you go. Let's just give this a try and see.
[00:02:46.0]Nurse: How is he doing?
[00:02:47.0]Father: He only took a few sips of water. He didn't choke, but now he's making some sort of gurgling noises.
[00:02:54.0]Nurse: Do you... Do you think he looks more uncomfortable?
[00:02:57.0]Mother: I don't know!
[00:02:59.0]Nurse: And what do you think, dad?
[00:03:01.0]Father: I'm not sure.
[00:03:02.0]Nurse: Well, let's take a look and see. Let's see what he's doing.
[00:03:06.0]Well, he does look like he's breathing just a little bit harder.
[00:03:10.0]Um, we do have some medication that we can give him
[00:03:14.0]to help ease that. We can also
[00:03:18.0]give him a little bit of oxygen to help alleviate some of that.
[00:03:23.0]Father: What medicine is that?
[00:03:25.0]
[00:03:30.0]Father: What medicine is that?
[00:03:32.0]Nurse: Um, we have a medication that we call morphine and we can,
[00:03:37.0]um, put a little bit underneath his tongue and the doctor's already ordered a small dose.
[00:03:49.0]So I happened to bring it in just because I suspected that this may happen,
[00:03:54.0]so let's just see if he'll take a little bit underneath his tongue. There.
[00:03:59.0]We'll give that a few minutes to work, and see how that, if that eases it.
[00:04:04.0]Mother: Is..is that gonna make him stop breathing?
[00:04:07.0]
[00:04:13.0]Mother: Is..is that gonna make him stop breathing?
[00:04:15.0]Nurse: It's not gonna make him stop breathing giving a very small dose.
[00:04:19.0]It's not a big dose that would knock his respiratory rate out.
[00:04:24.0]It's just enough to, to ease it.
[00:04:27.0]Mother: Ok. Nurse: Ok.
[00:04:29.0]
[00:04:30.0]Doctor: Hi. How does he seem to be feeling now?
[00:04:34.0]Nurse: I just gave him a little, small dose of morphine.
[00:04:38.0]His breathing was just a little bit labored.
[00:04:41.0]Mother: Well, he seems to be breathing more comfortably now.
[00:04:44.0]But, he's making this weird.. rattling noise, and
[00:04:48.0]I really wish he hadn't given him any of that water.
[00:04:49.0]
[00:04:56.0]Mother: ..I really wish he hadn't given him any of that water.
[00:04:59.0]Doctor: Do you mind if I just take a quick listen?
[00:05:02.0]
[00:05:13.0]Doctor: So those rattling and gurgling noises that you're hearing are actually coming
[00:05:16.0]from his throat more than his lungs. You shouldn't blame yourselves,
[00:05:20.0]because lots of babies with this condition; those that try to feed and those that don't
[00:05:25.0]can have those breathing sounds. It's something that we've been prepared for.
[00:05:29.0]There also is another medication that we can give, called Atropine,
[00:05:33.0]that helps him feel a little bit more comfortable.
[00:05:36.0]I think there's actually already an order on the chart for that as well.
[00:05:40.0]Mother: Okay.
[00:05:42.0]Doctor: Some people at this time wonder what sorts of things they can expect overnight,
[00:05:46.0]and overnight, as I said before, you can anticipate that his breathing might get a little bit worse,
[00:05:51.0]and that's something we'll make sure we keep an eye on. We'll make sure that we keep him as comfortable as we can
[00:05:55.0]during this time. Okay? And then also at certain points,
[00:06:00.0]if he tends to hang on a little longer than just tonight or tomorrow, we can have a discussion with the team again
[00:06:04.0]and we can determine what the appropriate things to do to manage his care will be,
[00:06:08.0]after you no longer have to be in the hospital.
[00:06:10.0]
[00:06:11.0]Father: You mean, like, a hospice? Well, we talked about that with the social worker,
[00:06:16.0]before we came to the hospital ...
[00:06:20.0]We're up for that if he can make it. Do you think I should stay here over the night?
[00:06:24.0]