In this episode, alongside Kelly Griffiths and Dr. Travis Engel, who are at the forefront of Centra's work in Advance Care Directives and Perinatal Loss and Palliative Care for newborns, we illuminate the importance of a holistic approach to this type of care. Their team, involving obstetricians, pediatricians, midwives, social workers, and spiritual care providers, ensure families facing perinatal loss receive culturally respectful and comprehensive support.
The team empowers parents to make informed decisions during challenging pregnancies and diagnoses. Educating families that they can have this control over their choices can ease anxiety and prevent future regrets. From creating meaningful birth plans to making pivotal decisions about labor and delivery, we discuss the lasting impact of these choices.
This podcast covers the power of open communication with healthcare providers, as well as the ongoing emotional journey of grieving families and the lasting support provided by healthcare professionals.
Cami Smith:
Hi and welcome to, and so Much More. I'm your host, Cami Smith, and I have some incredible visitors with me today Travis Engel, our chair of pediatrics, who we have had on the show a lot, so some of you are probably super familiar. You're kind of like our PSA pro. What do you need to know right now about your kids care and health and RSV coming up more to come on that later.
Cami Smith:
We also have Kelly Griffiths, who is our maternal and infant program manager, and also perinatal loss.
Cami Smith:
You're over that as well for a program manager role. That is correct, and that is what we're going to be talking about today is the advanced care directives for a perinatal loss type of situation, and I know so often when we talk about advanced care. We did a podcast recently with Spiritual Care, just talking about those decisions you need to make, and we even talked about when is the best time to make those decisions, and she said you don't make those decisions, you don't think that it's too early until it's too late. But it's so important to have these conversations, but then when we think about our kids, our babies, I feel like that takes that step just one bit further and just so difficult, and so I don't even want to try to define the work that you all do. And so, kelly, why don't we start with you? Why don't you tell us a little bit about you, since this is your first time with us, on and so Much More, and then jump into your role in this team, this program?
Dr. Travis Engel:
Okay, my name is Kelly Griffiths and I have been a nurse for 11 years. My background is primarily labor and delivery, and so I have had the honor for almost three years now to be over the Perinatal Law Services, and recently I took on this maternal and infant program manager role, and so I'm over various programs for the maternal and infant population here at Central Virginia and for Centra, and it is truly an honor just to really support these patients and families in the community on some of their toughest days.
Cami Smith:
So there may be those who are watching, who are recognizing your face, maybe recognizing your voice from a phone call, and that is it's some of the most difficult moments of their lives and you are the encouragement and the support that kind of comes out of the hard times. So first of all, thank you. I think what you do is amazing and I'm already getting emotional, but I do think that there's so much power in what you guys are able to do for these families. And then Travis, why don't you guys, why don't you tell me a little bit about your role in this team?
Kelli Griffiths:
So when Kelly initially took on this role about two or three years ago, I think one of her, one of the best things to come from that was to allow her to really kind of grow this department and this was kind of a shared idea between her and I to start an official advanced care and planning team for families that may be facing the prospect of losing a child right or having a child who's going to have some health care needs after they're born that are maybe more complex than they expected. So to set that up we initially had a conversation and then leadership really gave us room to grow that and expand it into something where we now officially consult with families and have an ability to keep families here where their support system is at, instead of them having to drive to a facility that's further away where their support system is not at.
Cami Smith:
Yeah.
Kelli Griffiths:
And allow them to, within kind of what their cultural beliefs are and the framework of values that they have, figure out what the right decisions and how the right path forward is going to play out for them. So I'm one of the medical directors, I'm the co-medical director of the program. We also have Dr Adam Young, who's an obstetrician and gynecologist, so we have a pediatric portion to this and we also have a women's health care portion to this, along with the collaboration and the very close ties that we have with our midwifery group as well.
Kelli Griffiths:
So we really have the whole family covered 360 degrees and the very close ties that we have with our midwifery group as well.
Dr. Travis Engel:
Okay, so we really have the whole family covered 360 degrees and we even have a social worker slash case manager Becca Whitehead. Oh my goodness, and she does wonderful for the community resources and just making sure mental health, checking in with them.
Kelli Griffiths:
Along with collaboration with our spiritual care department and our chaplaincy. So again, 360 degree, just full coverage for the family to help them explore the needs that they're going to have while they face these. Really just huge decisions, they're making.
Cami Smith:
So I think the best place to really start is from the beginning.
Cami Smith:
I think the best place to really start is from the beginning. So previously, to this specific team coming into play, patients had to drive to UVA. They had to drive to pretty far away locations and hospital facilities to not just have their needs met but to specifically have an advanced care team be a part of a diagnosis for the potential loss of a child upon delivery. Because this is your area of specialty and not mine, can you kind of just start us from there and then how the pieces fell into place?
Dr. Travis Engel:
Yeah, so I will say I have to give credit to others at Centra that we did try to have a team for years and years, but we never really had the time to give it our full capacity. And so my predecessor, evelyn Harker, was amazing with really spearheading perinatal loss services and you know, the palliative care, advanced care and planning, so I do want to give kudos to her. So with that foundation and base of Evelyn and me and the neonatologists doing what we can to support the population, we saw that it was beneficial when we could do it and when providers knew about us. And so, with Dr Engel coming to Centra, with Dr Young coming to Centra and then just pulling a formal team so that we have continuity of care, that was what really propelled our team to take off.
Cami Smith:
Tell me about the patient journey as they get this diagnosis. I think you previously shared it's around 20 weeks of a pregnancy for a pregnancy situation. What does that journey?
Dr. Travis Engel:
look like for them. So a lot of times patients find out about these terminal diagnoses around the anatomy scan, which is around 20 weeks, and with that the providers. Hopefully by now they know about our team and they can consult us to say you know, I have this patient with this diagnosis and depending on that we'll try and move really fast and situate a meeting, because the sooner we can meet, the better for everyone. That way their anxiety is lower and they feel more prepared and empowered to make these decisions and eventual delivery.
Kelli Griffiths:
That meeting and that initial consult for us kind of happens in three phases.
Kelli Griffiths:
We have kind of a meeting before the meeting, so to speak.
Kelli Griffiths:
I'll do a literature search on what the diagnosis is and kind of what the implications of that are for the child. Dr Young will look into any implications for the mother and then we also talk, if they are, with the midwife service, kind of how they know the patient, how they know the family and get their input as well. So we have that meeting to kind of pre-brief on what are the implications throughout the remainder of this pregnancy and shortly after birth. And then we set up a meeting with the family where Kelly largely leads that meeting and we go through a lot of the birth plan and kind of get an understanding of what the family's knowledge is of the situation, meet them where they're at and figure out what decisions have you already thought about, what decisions are you having trouble really grasping, and also in many cases some things that the family hasn't thought about, some questions or some things that, just because this is a very unique situation to them, they haven't had even the capacity or the time to consider to.
Dr. Travis Engel:
And it really is amazing to see them, because I usually meet them at an entrance, walk them in all throughout Virginia Baptist and get to the boardroom or wherever we're meeting the team's there, you know we can have smiling faces and all that, but they're still their anxieties up to here. But when just a few minutes into the meeting you can see it literally come down because they know that we truly care about them and we truly want this experience to be as best as possible.
Cami Smith:
Yeah, you take the unknown out of so much and I think these situations are devastating in and of themselves, but to have these unknown variables a part of that, I just can't imagine the anxiety level and so um. So in that meeting, can you divulge, like, what does that meeting look like and what types of things do you talk about?
Dr. Travis Engel:
So there's a palliative care birth plan that we template, that we follow, and in that we talk about delivery, the mode of delivery. Um, we talk about what does. What does it look like? Do you want to see, touch, feel baby? Do you want us to maybe wipe baby off some? It looks like monitoring and what you want you know if baby is still alive at this point? Do you want to hear his or her heartbeat? Yeah, you talked about the option for skin on skin.
Cami Smith:
Exactly, skin on skin.
Dr. Travis Engel:
And to make it, you know, like as much as like a normal labor and delivery you know, does dad want to cut the cord? Yeah, you know, does mom want to do skin to skin? Does dad want to do skin to skin?
Cami Smith:
You know we want to make it as normal as possible and they may not know that they can ask for those things, which I think is huge.
Kelli Griffiths:
That, precisely, is the matter at hand.
Cami Smith:
Yeah.
Kelli Griffiths:
Parents don't understand how much control they actually do have over this process.
Kelli Griffiths:
The outcomes are very uncontrollable in a lot of ways and that's what gives so much angst and so much anxiety and so much pressure on the situation. But when we really paint the picture for parents about how much control they have over this journey and let them reclaim some of that ownership on a situation that they felt like they've largely lost control of, that's what causes that relief, that wave of relief from the very beginning when we say how would you like to labor? You have control over this, you can make these decisions right.
Dr. Travis Engel:
Yeah, and you can also change your decision.
Kelli Griffiths:
Yeah.
Dr. Travis Engel:
Right now, this is what I want, but if something changes, we can pivot. Yeah, and you have that right.
Cami Smith:
When you get a diagnosis like that, you just immediately feel like you have zero control, like this is just done, and I love that you guys really invite them back, like come engage with this, come be a part of this, and that's something that also you know it empowers them, but I feel like walking away from it. Later they can look back and know that they have done everything that they can. That's incredible. I love that.
Kelli Griffiths:
These decisions that the families make they will live with forever, for better or for worse, and making these decisions ahead of time, where they've had some time to consider how they want this journey to be for their family, is extremely meaningful and the biggest gift that our team can give them during these really hard times. It just devastates me to think that sometimes families don't get the opportunity to make these decisions ahead of time and they make decisions in the moment, under various stresses that they may feel like they regret later, because they didn't necessarily have a moment to consider when they weren't stressed.
Cami Smith:
Yes, we help them take a breath.
Dr. Travis Engel:
Yes, and in the last few years we have had a family that had two children, both with a terminal diagnosis and they gave me permission to share this in generalities. But one baby they had to go somewhere else for and another baby they got to have that baby in Lynchburg and, being that their family's in Lynchburg, they were so thankful that they got to share this experience with their family and the older siblings.
Dr. Travis Engel:
The older siblings got to meet their younger sibling and that was very redemptive to see. Even if we weren't there for the last delivery, we could tell just from their affects and just from their family surrounding them that it was redemptive and that will be something I will take with me forever, that we could give them that experience.
Cami Smith:
Yeah, I'd ask your why. But goodness, that's really powerful. I mean, what a drastic difference.
Kelli Griffiths:
That experience in particular. Rarely do we have a chance to really compare two different delivery experiences for families who have encountered these tragic circumstances twice, these tragic circumstances twice.
Kelli Griffiths:
But I know that, in particular for some families, the question about do we let siblings come in? Do we want to? Thinking about that beforehand as a pediatrician, you know that I think about, you know the questions children have and how intuitive they are and stuff like that, and that is something we're in the moment. Families in the moment. Right, if you haven't thought about that at a time, families are very reactive to say, well, gosh, no, this is a very bad situation. I don't know if I want my children around this, but stepping back, a lot of families later on say, you know, I wish maybe I'd had some more time to consider, because I think maybe my children would have liked to see their brother or sister.
Dr. Travis Engel:
And it's evidence-based research that it's healthier. You know, those siblings will know okay, this is my sibling's birthday, this is this milestone. Okay, today they would be this old and graduating or this you know, and so just having an actual face, feeling, touching, holding whatever that is appropriate for that age of the sibling is really meaningful for the rest of their life.
Kelli Griffiths:
I think, just giving the families that space to ask those questions that they may have previously felt like well, is this an appropriate question? Is this an inappropriate question? Is this a stupid question, which there are none, you know. Just giving them that space. That's safe to say. This experience is unique to you Ask the questions you have. We can also share some questions you might not have thought about. And then again they just reclaim the control of the process, which is the biggest value we can offer them.
Cami Smith:
Yeah, absolutely Well, and I think about processing things as a family, and you know this year after year that these parents are going to have that moment of remembrance, a day of remembrance, and that will impact the children and their family. But whether or not they choose to do that, to know that that is an option and to have the time to consider it, just like all of the things that you guys, the questions you pose and the opportunities you put on the table the questions you pose and the opportunities you put on the table, it's just, it's life-changing. It's the difference between you know something that you are already going to carry with you for the rest of your life and being able to do it in a way that you have a little bit more control over. So, once you know those decisions are in place, is it just that initial meeting? What part does your team play in that birth plan, moving forward in the pregnancy?
Dr. Travis Engel:
It's a very fluid situation, so a lot of times there are a few questions that they need to take back home and talk about, and so I also want to mention that if their provider is not on our team, then we invite them to the space.
Cami Smith:
So, center provider or not, we want them to the space because we want a provider or not, correct we?
Dr. Travis Engel:
want them at that table all OB and midwife offices in Lynchburg, um or around. So, uh, we invite them and, like I said, they may take that question and talk about it at home and then they'll usually either call me or their provider and kind of say, okay, this is our decision, we'll put that in the birth plan and then, um, as much as we can, um can and not to pressure them and then print that out and then put it in the charge nurse notebook for labor and delivery so that it's in a safe space, but also so that there is awareness from the group that there is eventually going to be a palliative care patient coming and for the charge nurse to look at it only and for the nurse who's going to have them and take care of them when they come to the unit, as well as in their electronic chart, which Dr Engel takes care of.
Kelli Griffiths:
Yeah, so we put a well-documented, not only the birth plan but also an advanced care and planning note for that family. That really describes the diagnosis, the potential difficulties that may be encountered during labor and delivery and what some of our expectations are for that child shortly after delivery, which there's a wide spectrum, right. I think one thing that Kelly just brought up that sometimes gets lost in the mix of this is we talk about relieving the pressure and the stress that the family senses from the situation, which is extremely important. But there's another side of this, for the caregivers too, for the nurses who interact with the families, for the nurses at the bedside, for everyone involved in caring for that family that they're like. A lot of times these diagnoses are pretty rare. A lot of times the caregivers at the bedside have never encountered these diagnoses. They don't know what to expect.
Kelli Griffiths:
So, being able to read that advanced care and planning note, where I really put in pretty clear terms kind of what the diagnosis is, what it means for delivery and what it means for shortly after birth for the mom and baby, helps the nurses caring for the patient to be really responsive to the needs and have expectations that are reasonable. So the pressure that I think is relieved from the care team is also really important, and then the care team is like just very clear on the expectations of the parents and kind of what their wishes are, you know, and so it makes the process really really seamless, as opposed to something that's very stressful where we're asking a lot of questions. There's a lot of unknown, there's things that are coming up as the process evolves while mom is delivering.
Dr. Travis Engel:
Yes, yes, and how to be sensitive and asking those questions?
Cami Smith:
Yes, and when you and I discussed just our conversation before we were filming some of those questions that a nurse asks, because that's what they ask, like, how do you feel about um, about breastfeeding and um, the skin to skin, and just the things that could be triggering for for someone who has maybe pushed those options, they don't want to think about them, that's something they wanted but they can't have and you don't want to bring that back into the conversation and so equipping our caregivers to do that well, I think, is such a huge part of this. And then even their, their labor experience, like you mentioned, just visuals that need to be different, because there can't be smiley faces and baby bottles and things all over the place when that is not going to be your experience. So tell me a little bit about something that you worked specifically with to kind of meet that need.
Dr. Travis Engel:
Thank you. One thing that was really powerful for me to do it was simple, but I think it ended up being really powerful is there's these wonderful care boards all throughout labor and delivery and, like you said, there's baby bottles, and you know, it's light pink and light blue and very you know, babyish and happy and nursery-like, but that's not really the vibe we're having when we have these patients in usually a couple specific rooms.
Dr. Travis Engel:
And so I started talking with my leaders and saying what can we do to make the care boards so that's where we write the patient's names, the support people's names, all that what can we do to change these, instead of just kind of going through marker and scribbling things out?
Dr. Travis Engel:
and trying to hide it, you know like we should not be making a makeshift thing. And so they said well, you know, look for one and we can, we can buy it and, you know, change it out. And I was looking and there were no care boards that I could find that were appropriate for perinatal loss or palliative care. And so, with no graphic design background, I just decided to try and design one and I thought, um, you know what would, what would be important to me? And so I did it. It was a plain, white, simple background. It has some leaves on it, it's just very aesthetically pleasing, simple, minimalistic. And so it has all the same questions, but I did take out are you breastfeeding or bottle feeding? Because, depending on the diagnosis, you know you can't always do that and it'll be in their birth plan, you know, maybe, if they can. And then, just you know, at the bottom it says something like you're not alone, Thanks for letting us take care of you.
Cami Smith:
Oh, I love that. Thank you, I love that. Well, just addressing kind of the thought that it must be a pretty isolating feeling as parents in that room, I mean, you've already addressed that need by making this an option here where they have a support system, where they have some foundation built. So you had shared that there is something that these parents can take home.
Dr. Travis Engel:
So part of the birth plan is asking them what kind of mementos are okay. If we do so, we have really special things. My favorite is the baby birthstone rings, and the Central Foundation has been a big supporter in initiating these. So we have these little tiny gold rings that have each month's birthstone in it, and so we take pictures of the baby with it and then we give it back to the parents to wear or hold or use or see we also have. My second favorite thing is the weighted bears slash bunnies.
Dr. Travis Engel:
There's different animals, elephants but we try to match the weight of the baby to filling the animal with rice. Okay, and it's a very kinetic thing for, like the younger siblings, if there are any to feel. But moms, you know they go home with aching arms. So to have that when they leave the hospital, as much as you know we can to the weight of the baby is really impactful and it is evidence-based, which we are all about evidence-based research and support here at Centra. And so you know, for the most part, everyone wants the rings, everyone wants the bears or bunnies and we have a really good. You know, for the most part, everyone wants the rings, Everyone wants the bears or bunnies, and we have a really good, you know relationship with the Center Foundation and they have supported so much of this program, as well as the community.
Cami Smith:
Yeah, we're going to be having a conversation with the Center Foundation a little bit later this year to kind of talk about all that they do, because they do so much within the health system. They identify those needs and then they kind of coordinate the giving from our community to meet those needs and the funds that are raised. Um and it. It is incredibly powerful to see the change in the impact that they have. So thank you for sharing that. Um, the weighted bears, I just can't imagine the hole that. I mean you can never fill that hole but to just have something to hold that's beautiful.
Dr. Travis Engel:
There's one mom that shared that she just wanted to lay in bed and have the animal right on her chest so that she could feel like it was her baby laying on her, and I said that's okay, do what?
Cami Smith:
you need to do, yeah. So what type of follow-up is done with these parents? Because, I mean, you play a huge role in this whole process and I imagine that's a lot of space to be held between you holding it for them and them letting you into that moment. What does that look like after the?
Dr. Travis Engel:
birth. So I have the honor and privilege to also follow them for up to a year postpartum. So they're different milestones. So if they had a baby prematurely, I could follow up on their due date, um on the one year anniversary and just do those intermittent check-ins with them to let them know that we have not forgotten about their baby and although their life was short, it was meaningful and it was powerful and you know, just making sure they have the resources they need.
Dr. Travis Engel:
The community support. There's so many, you know, therapists around here. There's so many support groups locally and nationally.
Kelli Griffiths:
Yeah, I think that's one thing that families have some questions about too. I think, um, the idea of having a baby and then not leaving the hospital with that baby is very it's a very foreign concept right yes.
Kelli Griffiths:
So the families wonder what does this look like after they leave? So we have a really good way of kind of enmeshing both the social and the health care that the mom receives and the family receives after they leave, because they're still going to have their normal or routine OBGYN follow-ups with their midwife or their OBGYN provider, along with the social follow-up that's really necessary and the emotional follow-up that's necessary after this loss that their family has experienced. So the fact that we're still a team dealing with all of this in parallel, in tandem, I mean it's just incredible care for the family.
Cami Smith:
So, as a part of just that follow-up and that continued touch points that you have, what beyond that is there for these families?
Dr. Travis Engel:
So we also have a Walk to Remember every year, and this year is the 36th annual.
Cami Smith:
Wow.
Dr. Travis Engel:
Yes, 36 years. That's incredible. Yes, centra has really invested into this community for 36 years, especially for this Walk to Remember, and so anyone who has been touched by the loss of a baby, or in infancy they, can come to this walk. We have a short ceremony and we have spiritual care and education. The chaplains come I do, usually a liturgy called. We Remember them and we just hold space for these babies gone too soon and then we take pinwheels that the parents and the families and siblings can all decorate before the ceremony and we take those and we walk to our memorial garden, which is on Oak Lane at Virginia Baptist, and we plant these in our memorial garden and it's just, it's a really whimsical place. The pinwheels you know all colors to represent. You know the babies blue, pink, pink, silver, gold, whatever you want. Yes, thank you, and parents have said it's very healing for them. Um, one family shared that every mother's day they go to have a picnic there.
Cami Smith:
Oh wow, so this is in the one and done this. This is a place they can go, You're right.
Dr. Travis Engel:
Yes, there's benches there that they can sit and it's very powerful. I know my son loves it. We've had a loss ourselves, and so he got to see our baby's pinwheel there that he decorated which was really powerful.
Cami Smith:
Yeah.
Kelli Griffiths:
I think it's. I haven't experienced loss like this before, but I certainly have been around, unfortunately, many families that have. When I was a physician in the pediatric ICU before. I mean, we saw loss in a lot of different ways and one thing that I noticed from parents is you never know when that loss is going to kind of strike your heart right. It may be a milestone, it may be a date that you remember, it may just come on you out of nowhere and to have a space like that to be able to go when that moment kind of hits you, it's just really great and that's really emblematic of the community and the healthcare we provide here and are small enough to care for you individually but large enough to offer services that can keep you here. So I love that.
Kelli Griffiths:
I think one thing that we talked about a lot is loss and loss shortly after birth. But as the chair of pediatrics, I would be remiss if I didn't mention that some of these children that we do these consults on are not going to die shortly after birth. They're going to live after birth, but they just have some very specific, complex medical needs. So our team's awareness after delivery, knowing that they may show up to the ER with some different medical needs and some different medical conditions and being able to support that family so that they don't feel like golly, I'm an hour and a half away from an academic medical center.
Kelli Griffiths:
Yes, how terrifying, is that.
Dr. Travis Engel:
And we have a really good relationship with the geneticists for instance, at UVA and MFM that comes to Virginia Baptist, so that's really powerful for the families too.
Kelli Griffiths:
So for them to know that they either may be able to be admitted here if their child gets sick and we can handle it because we know their case individually or, alternatively, that they're going to be safe here while we arrange transfer to where they need to go. So that they don't have to drive in a car for an hour and a half to get to where they need to be is really important for those families to know too.
Cami Smith:
Yeah, I think when you talk about this initial conversation, like infant loss, you don't think about those who are not lost immediately but need intense care. So I'm glad that you mentioned that. It must feel so overwhelming to think about care being out of your reach, further than you can go or further than the time you may have to go, and so having these conversations and for those of you who are listening who may think you know I'm not in a lost situation but that could meet a need I think it's important to know what is available, what services that you can ask for and really just advocate for yourself in a different way, for yourself and for your child. Yeah, so many resources that are available that I think so many don't know about and they're so crucial.
Cami Smith:
I know you guys have a presence on the centralhealthcom website for perinatal loss I think is the title of the page, but we had talked about getting some resources as well that we'll put in the description just different things that would be good to have in the hands of those who are either anticipating this or maybe even after the fact, coming to the walk to remember knowing that that is available. I think will be huge. So check out the information in the description and thank you both for having this conversation, for even letting us know that this conversation needed to be had. I'm so thankful to just kind of shine a light on a resource that could be so life-changing for somebody. So thank you for what you do and thank you all for joining us on and so Much More.
