As a part of International Pregnancy and Infant Loss Awareness Month, we sat down to talk about bereavement care with our resident Neonatal Nurse Practitioner (NNP), Adrienne Isaacs.
Trigger Warning: This interview and content covers loss and bereavement from a medical provider’s perspective.
You can listen to the interview or read it below.
Sonal Patel
Hi again. Welcome back NayaCare Family. This is again Dr. Patel. And today we are talking to Trigger Warning. This is about infant loss. So just wanted to forewarn you guys, and what we talk about and the things we wanted to highlight is actually our experience as the medical community handling loss from our end of our viewpoint. So today I have Adrienne and really quickly, Adrienne and I go way back and we’ve actually worked professionally and she’s worked for NayaCare. We worked in the NICU together.
Sonal Patel
So welcome, Adrienne. Hello.
Adrienne Isaacs
Thanks for having me.
Sonal Patel
So, Adrienne, how long have you been a nurse practitioner?
Adrienne Isaacs
I have been a nurse practitioner for ten years. I’ve been in the NICU for 19 years, my entire nursing career.
Sonal Patel
Wow. And I know this is a really unfair question to ask, but I’m going to ask it anyways, what a couple of sentences that summarize the nice for you in those 19 years?
Adrienne Isaacs
Oh, that is a tough question. I would say friendships. I’ve learned a lot over the years of learning how to really care for the families in addition to caring for the patient. And I would say empathy. I’ve really learned how to be very empathetic in those many years that I’ve been in the NICU.
Sonal Patel
And obviously the NICU. I always say it’s a roller coaster. You have your wins and you have your losses. Is there any particular infant loss that has stayed with you or anything that way?
Adrienne Isaacs
Yes, there are actually a few, and they two of them go back to when I was a nurse, and one of the losses that stayed with me was an infant that we thought we were going to do berievement care for. And that was the plan all along. And then the plan changed to actually resuscitating the baby. And so that one was very traumatic for everyone involved. That took a lot of debriefing for people to be able to come to terms with that one. And another one that was really stuck with me.
Adrienne Isaacs
Was it really helped me learn how to be culturally sensitive. It involved the baby whose family was from Iraq and mom was developmentally delayed and dad was not able to come to the United States, and this baby was very devastated, developmentally, and she was not going to survive. But we had to keep her alive because there was never a consensus in decision making. And we just really learned how to care for this family and care for the baby at the same time, while we were all doing something that was very stressful for us in in caring for the baby that we felt like was really suffering.
Adrienne Isaacs
But we still did our best to make her comfortable and to make her family comfortable. And ultimately, when we were able to make decisions when we were finally able to get the proceedings to happen. So that we could withdraw support on her. We were able to really have all of the family members there and support them. And they in the end, we’re so grateful. And they repeatedly told us how we made it a positive experience for them because of how we really tried to support them and their loved little baby through all of it.
Adrienne Isaacs
Again, it was something. It was very stressful for the whole team, and we had to have lots of debriefing on it. But those are two things that have really stuck with me since I was a nurse, and since I’ve been an NNP, there are kind of some similar situations like that that just really let you know that you’re caring for the family too and it can make such a huge impact when you see it as being such a from my standpoint, as a care provider being such a negative thing and feel like it’s really negatively affecting the family.
Adrienne Isaacs
But as long as you continue to support and listen to the family, they have taken this negative thing, this stressful experience and really saw that we did our best to care for them and for their baby. So I think that really can turn into a positive experience.
Sonal Patel
I mean, you said so much and there’s so much to unpack. I’m going to kind of take a little by little just because of the step that you had set. So now you have an infant loss. You mentioned bereavement care. What does that exactly look like? And when does that exactly entail?
Adrienne Isaacs
Beareavement care entails quite a bit, actually, on the front end, I’d say bereavement care manages the family in helping families make decisions because bereavement care can start long before the infant passes away. The bereavement care can start prenatally when there has been a diagnosis that maybe the baby has some anomalies that just may not be compatible with, like, so bereavement care starts there with providing counseling, support services, providing resources for them to know, you know what they can do as far as funerals, can they take pictures of their baby after the baby’s born?
Adrienne Isaacs
Are there support groups? Are there Facebook groups that we know about that we can connect these families to who might have experienced the same thing so bereavement care can start there. And then, you know, after the baby’s born and as the baby survives, we can support the family there actively in letting them get to know their baby and bond with their baby, even letting moms pump. If that is something interest to them, letting them know whether if it’s a baby who’s not able to eat, letting them just be able to put a little breast milk in the baby’s mouth or letting the mom try to let the baby latch and suckle, maybe on an empty breast.
Adrienne Isaacs
All of these things are very comforting to families and supporting them to give them that experience that they may not have thought was possible with a baby. Now all of this stuff may not be possible. It just kind of depends on the baby situation, but that is so we have prenataly and then we have after the baby is born and then after the baby passes away, berievement care includes culturally sensitive care, asking families, don’t be afraid to ask families what they need culturally, what can we do to support them culturally?
Adrienne Isaacs
The biggest lesson I’ve always learned is don’t assume what they need. Just ask them, what is it that I can do for you that is going to support you culturally to help you through this grief. Whether it has been trying to think of an example, we’ve actually let a family bring incense into a room before just little things like that can really support these families. And so just asking them. And in those situations, we do our best to help accommodate those. And we can bring in the chaplain.
Adrienne Isaacs
Chaplains are always great at helping to helping us accommodate these things and getting in touch with hospital upper level people to let us kind of bend the rules a little bit so we can do our best to support these families. And then for bereavement care includes providing loss resources as far as counseling, even funeral services. Sometimes families don’t have financial capabilities to provide funeral services for those babies. So it goes along with providing knowing which companies are willing to provide low for free, low cost or free funeral services for their babies.
Sonal Patel
And then mementos.Could you mention some of the mementos?
Adrienne Isaacs
Yeah. There is a company called Now I Lay Me Down to Sleep, and they are a volunteer run photo photography business who has volunteer photographers who will come in and they’re on call and they will come in and take pictures of the family and the baby who has passed away and they will do any photos that the family would like if they want their children to hold the baby or whatever. And mementos can be, most hospitals will provide nice little gowns, nice little hats that have been handmade by volunteers in the community and donated to the hospital.
Adrienne Isaacs
We also do footprints. We’ll do hair clippings, something that just makes me emotional is something that I always think is such a I think it’s a really neat gift that we as care providers have been given. And as a nurse practitioner, I don’t really do this anymore. But giving a bath to the baby after it’s passed away, it’s something that I just always felt like. I felt like it was a gift to me that those families let me have the opportunity. I’m so sorry.
Sonal Patel
No, I think I think that’s another lesson that I know. Dr. Landover is one of formidable NICU docs in our community, and she was the first one to say, Just cry and cry in front of the families and cry when you’re feeling this because at the end of the day, we’re all humans. And we’re also in a moment of time in that same situation that the families in, like you said, prenatal, we might have been experiencing it for a long period of time, but in that moment of time because unfortunately, we have to be the ones declaring when the baby’s passed for record keeping.
Sonal Patel
And so it hits you. It hits you. And I think it’s more it’s to really show them that how much it meant for you also and how invested you are in that. So it is. I mean, it’s very heavy. I always could not. I mean, I cry mean, I cried with for all of them. I cried there. But the term babies, you know, since certain set of babies kind of get you. And it was always term babies that I mean, I was bawling with the mothers because it was just so heart wrenching, you know, like this mom who anticipated having a baby, they probably had whole nine to ten months of celebrating, got their room ready, their crib ready, they had celebrated with families.
Sonal Patel
And now all of a sudden, they’re going in to have this baby and everyone. So I was excited, family members, community members, and all of a sudden, this baby, you lose that baby. And I mean, it’s hard. I think any age is hard. But like you said, there’s a couple of things that kind of stick with you. And I just remember every single time the term baby, I would just be like, you just couldn’t hold it anymore. And that’s when Dr. Landover at the phone, hold it, let them see you cry, let them know that what it meant for you also.
Sonal Patel
And that kind of leads us to this good segment is, how do you take care of yourself or what do you do? I know you had mentioned debriefing and the debriefing for the people who aren’t in the medical community is we, as a team, will come together and kind of go through the steps of what happened, how it happened, and just put our own parts of what we felt and what we are going through. And there’s no judgment. There’s no anything. There’s no recording of it. It’s just coming to a safe space, a central space and kind of talking about what happened.
Sonal Patel
So that’s what Debriefing is. Adrienne, do you want to add more to that?
Adrienne Isaacs
Something that I really value, in debriefing is the ability to get our questions answered, especially nurses, nurses. We often have questions we may not understand the decisions that were made or how the providers, physicians and nurse practitioners came about a decision or the consult team came about the decision to move forward with withdrawing support on this baby. And I think that it is like Sonal said, a safe space for people to ask questions and say, Why did you guys do this or why didn’t we do this sooner or why did we have to do this?
Adrienne Isaacs
And I think it just helps people come to terms with what had happened with that baby. When you’re able to go in there and freely ask questions and get things clarified and even just cry, really and get support from your colleagues.
Sonal Patel
Yeah, we have a mutual friend in common who I’m not going to name any names, but I actually had a baby loss as well. And I just remember when we had a similar incidents in the NICU, I repeatedly just kept going to her and say, Am I doing this right? What am I missing? What would you have liked at this time and moment? Help me help this family and make sure that, like you said, you are on par with what the family needed. Asking again, a mom who’s already gone through something very similar and then also asking the family, what do they need?
Sonal Patel
How else do you help yourself afterwards?
Adrienne Isaacs
Talked to my colleague, like not in a professional setting, I will try to meet up with the colleagues who may have been involved in that and just go to a social setting and talk and not even necessarily talk about that case. But just know that because those people are colleagues, that if we need to talk about it, we can without risking breaking HIPPA at all, but still just being able to be social and relax and let steam off. Also, working out is very good for me.
Adrienne Isaacs
Very therapeutic for me, whether it’s walking, you’re going to working out class or lifting weights. And sometimes this is not often. But sometimes you just need to go home and have a glass of wine and sit on the couch and not talk to anybody and just watch TV. You don’t want to answer questions from your husband. You just want to sit there and do nothing. And that is a way that I have done self care. Also, like, I can’t talk about it right now. Just need to be.
Sonal Patel
Yep. Yeah. The other thing that happens that some people might not be aware about that every year. It just depends on what institution you are. There’s actually a ceremony for all the babies who have passed away, and you get to go there and talk again about the process and the medical perspective, families are there. We honor the babies that have passed away, and that’s another time to kind of reconnect and to make sure that each passing of any baby. I mean, as I said, they are the wins and the losses and that turns.
Sonal Patel
But it affects you. It affects you how that baby has taught to you. The baby teaches you something and you just have to be open to what it teaches you and for the parents to realize that within your own journey, what impact that baby had on you as a provider or a physician or nurse practitioner. Yeah.
Adrienne Isaacs
I think it’s a really special experience to be able to do that, to go to those remembrance ceremonies. Yeah.
Sonal Patel
I do remember. Just lighten up just a little. I do remember there was one case. So I’m a Patriots fan. No. Speaking in Bronco country, I had this lanyard that has Patriots symbol on, and it was a gift. And on the lanyard had all my credentials and everything like that. And I was in a situation where the baby had just one of those diagnosis that, you know, congenitally, the parents were knew about it. There was a whole set up. There was a whole plan. And so, you know, it was coming.
Sonal Patel
But still, the mood is really heavy when you’re in the situation waiting for the baby to come out waiting, you know, there’s always, like, glimmer of hope that we’re wrong, you know, even for the parents and our sites, like, maybe. So you are still prepared to be like, how can I help this kid out? But knowing the fact and within this, the dad huge Bronco fan called me out on the Patriots, and I thought that was just so surreal to be, like, in the midst of all this, we could still connect on that human level of you’re calling me out because I’m a Patriots fan, and it just kind of made it a little nice moment to be like, okay, we’re not gonna take it so seriously in the sense that it has to be doom.
Sonal Patel
We’re just gonna celebrate this like that’s coming. And however long it’s going to be with us, but we’re not going to be like, okay, this is at the end of the world. But, no, let’s have some a little bit of joy within the bereavement part of it, too, right. That was an important lesson that I learned that it doesn’t always have to be like, like, I have to be depressed or I have to be sad or I have to be there. It’s like, no, I could actually be in the moment with the parents and go through all the emotions.
Sonal Patel
Right.
Adrienne Isaacs
And I do. And I think that being said as providers is important for us to read the room. Essentially, right? Follow their lead as to what is going to be appropriate. Dad made that joke. And so that opens the door for you to be able to lighten up a little. But it’s not necessarily on us to make those jokes like, it may not be a no go.
Sonal Patel
No, we don’t initiate. Exactly.
Adrienne Isaacs
So I think that’s something to be very aware of is that we always aim to be respectful of the family. And so we just make sure that we follow their lead when it comes to anything.
Sonal Patel
The other set of people that we don’t really talk about when we talk about bereavement, but they’re so important are the siblings and how to support the families that know whichever way the baby lose, they pass about how to support the families that way. And so again, it’s part of the process to be like, okay, how can we help you? Sometimes child life that’s in there or social workers can help with siblings, particularly older siblings who are much aware of what is concretely happening.
Adrienne Isaacs
Very important component in most bigger hospitals who deal with a lot of bereavement care and end of life care with our babies are going to have those child life resources. It’s a very important resource to have, I think. And I think it makes a really positive impact on the family.
Sonal Patel
Yeah. I don’t think there’s ever a right thing to say. And like I said, going back to the family leading the room. But is there something that you have formulated or you formed that has helped you and your families understand the impact of the babies loss or something that you say to these families?
Adrienne Isaacs
That’s a good question. I don’t I don’t know that there’s something that I typically say other than I just make sure that they have what they need in that moment to be comfortable. I think my actions really help me whether they want to sit there and hold the baby while the baby takes the last breath. Or I’ve had the case where the family didn’t want to be there. And so I’m the one holding the baby as the baby is taking its last breath. And that is the wishes of the family.
Adrienne Isaacs
And so I think I just make sure that I ask questions to see what they need. And I know we’ve learned never to say things like, oh, this is happening for a reason. It’s very important not to to say things that are trite and, oh, I know what you’re going through because I don’t know what you’re going through. You know, I would just say I’m here to support you in any way that you need me. I’m happy to call your pastor for you. I’m happy to get the chaplain for you.
Adrienne Isaacs
Some people are like, I don’t want the chaplain. I don’t have a pastor. Please don’t do that. Other people. Will you call my mom for me? I just offer, what can I do for you in this moment? Would you like me to sit here with you? And I will sit there with them, give them tissues, hold their hand, let them be with their baby. Or if they don’t want me there, I will step out. So it’s never the same thing that I say. It’s just again.
Adrienne Isaacs
I’m letting the families guide me as to what they need, making sure that they know that I am there to support them and get them water. If mom wants some water, I’ll go get water. If dad needs water, I’m gonna go get dad some water. Just even things like that make calling child life, or, you know, bringing in a coloring book for the kids, just little. It’s more the actions, I think. Then what I’m saying. And if it’s an infant that we’ve had for the long term, of course, I’m going to tell the parents that I’m sad too, you know, like you said, we cry.
Adrienne Isaacs
But we also are very careful not to cry to the extent that they have to take care of us. It’s an appropriate amount of it’s a balance of letting them know that we value them and we want to honor their baby. But it’s not about us.
Sonal Patel
It’s not about us.
Adrienne Isaacs
And so those are things that I think they’re really important to hold on to as providers. And, yeah, I’ve definitely cried with families and told them, I am so sorry. This is so hard. And I’m here for you. You know, I feel like that’s the best that I can say because I don’t want to say the wrong things. And so although a lot of people can understand in a grieving situation, it’s difficult for people to know what to say. And so sometimes people do say the wrong thing.
Adrienne Isaacs
And that’s okay. Give yourself grace if you realize that you’re like, oh, I shouldn’t have said that to this family. It’s also important to remember that we have to show ourselves grace in these situations, too, because it’s very hard for us as well, especially if it’s a first loss experience for us in our careers. So grace.
Sonal Patel
I was used to kind of also in and out of the room, like, I’d be like, okay, do you need anything and then give us some space and then know that that you’re coming back like, it’s not giving on the space. And then you’re just kind of leaving because that does happen, too. But it’s like, okay, I’m just going to check up on you because you’re right. You have to balance that to be like, my too intrusive or am I not being in a supportive enough? You know, it’s the kind of balance to be like, there.
Sonal Patel
And yeah, it is hard. It is so hard. I mean, it’s just the full aspect of is so hard. But they are hopefully there are ways that the community, the medical community, as you’ve seen, has kind of created some sort of system, allows us to know what to do, how to kind of do it and gives us a little bit of a roadmap, but not so much that you have to be so stoic. You cannot do any. No, that’s not it. That’s not it at all.
Adrienne Isaacs
And like I said previously, I feel like it’s such an honor to be able to care for these families at the beginning of life and at the end of life, like, they’re giving me this opportunity to care for them. And I want to do my best to support them and respect them through it because it really is an honor to be able to be there at such an important time in their life that’s going to change them forever.
Sonal Patel
Yeah. And the whole hope is that I don’t care if they don’t remember my name or they don’t care about, you know, the time. I just want them to know that they were they were important to us as well, and they mattered. And that’s the feeling I want them to take away that. Yes, this is a really hard time in our lives, but we had help going through it.
Adrienne Isaacs
I agree.
Sonal Patel
It is infant loss month, this month in October. That’s why we’re doing this. So for any family who’s going through this, our biggest heartfelt, warm condolences. And just we are so sorry that you had to deal with this. Hopefully, this is giving you an insight from the medical profession of how it affects us and what we go through as well and how much your families mean to us at the end of the day, where they’re taking care of these babies and they mean the world to us as well.
Sonal Patel
And hopefully you feel supported in that time, if you ever have to face it.
Adrienne Isaacs
Thanks for having Sonal.
Sonal Patel
Of course. Thanks, Adrienne, and thank you for being so true and honest. So I totally appreciate that.
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