In this insightful episode of the Incubator Podcast, join Daphna and Ben as they delve into the world of NICU follow-up care. Featuring guests Melissa Woythaler, Mollie Warren, and Kristen Sullivan, the discussion explores the comprehensive approach to post-NICU care, including the innovative Transition to Home program established at Mass General Brigham and the challenges of establishing a medical home for former NICU patients. Discover the intricacies of managing various NICU follow-up programs, the vital role of neonatologists, and the significant impact these programs have on families. This episode is a deep dive into the importance of continuous care from NICU to home, underscoring the dedication and collaboration needed to support vulnerable infants and their families.
As always, feel free to send us questions, comments, or suggestions to our email: firstname.lastname@example.org. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.
Hello everybody, welcome back to the Incubator podcast. We are back this Sunday with a great episode. We definitely have the pleasure of having on today three guests all coming from Boston to talk to us about follow up. Our guests are Dr Mollie Warren, who is the director of the NICU transition to home program at Brigham and Women's Hospital in the Department of Pediatric Mass, general Brigham. Dr Melissa Woith-Aller is the medical director of the Center for Child Development and an instructor in pediatrics at Harvard Med School. And we have the pleasure of having on with us also Kristen Sullivan, who is the program manager for the transition to home and the practice manager for the NICU follow up program. So, without further ado, they all have impressive bios. All of them will be linked in the show notes, but until then, please welcome to the show. Dr Woith-Aller, dr Warren and Kristen Sullivan. Melissa Woith-Aller, Mollie Warren, kristen Sullivan. Thank you all for joining us today on the podcast. Thank you for having us.
Thank you so much. Thanks for having us.
Daphna, you are our resident expert in NICU follow up and I know you've been looking forward to this interview, so I'm going to let you get us started today.
Perfect. I have a list of questions, I know, but my first is just I'm hoping you can just introduce the program a little bit. What makes your program special and you know what roles you know? It takes a lot of people actually to start a follow up clinic and I think the amount of work that it requires is underestimated. So just tell us a little bit, just to start, about the program and how you got here.
The programs that we have are all kind of located under the umbrella of the Center for Child Development and I inherited the program as the director like a year and a half ago about. And it's actually because I've been in other programs and you have been directors of other programs and this program it is really thorough and I think really kind of encapsulates post NICU care which I think is so important because it's a huge void for a lot of families, you know, after they have a vulnerable child who's in the NICU and sick. And so we have multiple programs. We have a feeding and nutrition program and we have the developmental follow program, we have a lactation program and then we have a kind of we call it the preschool program is kind of bridging kids who are need longer term care to get them into that care. And then of course we have Mollie's program, which I'm not sure I'm sure you can hear. But of course we have Mollie's program which I'm not going to discuss at all because that's totally her the transition to home program and so, starting with discharge and kind of going through three to five years of age, we kind of help families, at whatever stage they're at, to really provide that extra care and help the pediatricians provide that extra care for these infants.
And before Mollie tells us about the transition to care, transition to home piece, I think that that's what I love about the program it's really comprehensive. And then I think you guys have done such a nice job of thinking ahead of what our families are really going to need going home and we talk about this sometime. We spend so much money and time and staffing and resources in, you know, the NICU admission, but we know that the bulk of development and childhood happens outside of the NICU and our families still need that support. So can you tell us a little bit about how families transition kind of from one system to the other?
So with the transition to home program that's the purpose to really help ease that transition from the inpatient side to the home environment. With our transition to home program we actually start while babies are still admitted in the NICU. We introduce the program to the families and we help with the discharge planning for infants. Right now we are really focusing on infants that go home with any kind of medical equipment or those that might be born the most prematurely or might have the most ongoing needs after discharge. And then the program itself for transition to home. It's completely virtually based. So we set up weekly virtual calls with the families and also we do daily remote monitoring for the babies too, and so after the families go home they have the connection still to the NICU team and NICU environment and so it's not just like after discharge is like goodbye, good luck. You know we'll see you in a couple months for the NICU follow up program. You know it's really the next day. We're following up with the families to make sure that have the first night go at home and we have really close follow up with our multidisciplinary team as the same team that also sees the babies in the NICU follow up program too. So the, and it's also some of the same providers that the families met while they're inpatient. So really we're with them through the entire journey while they're inpatient, all the way through the NICU follow up program.
And I think that's very interesting, because now you're you're literally describing the concept of a medical home where patients don't have to be slept around different centers and to see their different specialists. How difficult is it? Which I kind of know the answer, but how difficult is it to establish a medical home for former NICU patients?
It has a lot of players involved, and so I think it was a challenge to establish this and also, at the same time, everybody wants what's best for the babies, so it's not really a hard pitch to sell to people, though you just have to. When, when I started the program, I had to be really mindful to make sure that every stakeholder was involved and everybody's voice was heard and really understand what other everybody valued the nurses, the faculty, the attendings, even the parents and administrative side of things and so it was something that was easy to do, in the sense that everyone was very excited about starting a program like this, and also you know how this challenges with, as anything new would be to start something new in an, in an institution.
One question for Melissa. You were mentioning how you inherited or you took over the NICU follow-up program. I think a lot of people are often asking the question why do we even need a new natologist in the NICU follow-up program? Because if you go to follow-up programs you can see that there are players that are critical to the follow-up of these infants, notably the therapists, the care coordinators. And and then even when we as fellows go to the NICU follow-up program, you're there and you're like what am I supposed to do? I'm observing people administering Baileys and but you feel while in the NICU we feel so useful and so adequate in the NICU follow-up program. Sometimes you're like what am I supposed to do here?
And so I mean you got, you got into the pointed questions here at seven minutes.
I would like to say, ben, I wish I felt like I had nothing to do when I was at clinic, yeah, but unfortunately that is not the case. I'm running around constantly. I mean, we don't have a social worker right now which we would like to get moving forward, but you're the social worker. You're coordinating medical care. You're writing scripts for different things, you know it's. You're coordinating with the pediatrician, you know things like that, making sure they get outpatient services they need. I would say it's. It's definitely much longer than the eight to ten hour day that we have and it's constant. So I'm on service now, like we were talking about, but I'm still getting messages from families and writing scripts and doing things behind the scenes prior authorizations and things like that to help get all of this stuff done. So I wish that I felt useless every once in a while, but I definitely feel very busy and there's a lot, a lot of moving parts.
And so that's important, because you are not their pediatrician, you are not substituting yourself for their pediatrician, and yet the the, the care and the service you provide in the follow-up program is sort of a whole other realm of care that we can provide to our patients that we're really never, really were very rarely experiencing inside the walls of the ICU, because sometimes we're so well supported in the ICU and so we can only focus on the lines and the meds and so on. And so what was the motivation to actually take this on? Because I know that for many people they say, well, that's, that's not what I signed up for. I want to be doing the ICU stuff, and so I'm curious as to what prompted you to to step up to the plate here and take that, that role.
Yeah, I would say I really love the relationships that are built in the NICU. I mean, it's just amazing that you could really be there for the care before the mom even delivers, right with you know, doing prenatal consults, being at their delivery and taking care of the child acutely during their illness, but then also being able to follow up with them after and see how they develop. And having that relationship with the family is really amazing, and I do. I it was, you know, when you're looking at what you want to do, it's like do I want to be an ICU attending where you're doing procedures and you know acute care, or do I want longer term things? And I didn't dislike clinic but I hated runny noses and ear infections, right, and so you know, if I could cut all of that out but still have the relationship with the families and see them, which is kind of what I'm doing, then there you know there's that's a great place to be. But also I find that the families are so thankful for for Mollie and I because they meet us in, you know, in the unit. When they come out they don't have to explain their whole story. You know there's definitely PTSD from being in the NICU and then we know them and they can feel comfortable, you know, having us see the babies. Or sometimes they trust us more because we know the babies and we saw them through their illness and you know so I think it's really nice for the families to transition out to people that they know as well so that they have that, you know, easier transition and I think as our babies have become.
You know where our follow up rates are very high and I think much of that is because of the transition to home program and also because our model is a little bit different than what you see in typical neurodevelopmental follow up, where we're seeing families more frequently. I think building that relationship so early and then seeing them really frequently, early on, every couple of months, whether it's virtual, whether it's in person, has been great, and also because of that, you know, I've been in clinic where I've been part of the follow up clinic for the past three and a half years and so before, when they just had clinic one day a week, it was very much kind of your healthiest babies out of your, you know, out of your NICU population that were really kind of continuing to come in and follow up and just, you know, for more reassurance. It seemed, and now it does seem that our population is a little bit more acute, where there are interventions being made in clinic where a baby is not doing great or there's a question about you know what's happening from the feeding perspective or mixing formula, and I can see the clinicians really hands on, making a lot of decisions in real time, which is amazing.
So yeah, Kristen, to build on that. I feel like we tried to build and it's so great because I would say that Kristen, Mollie and I have really worked a lot together. So it's like really between administration and, you know, physicians building this together so that it's sustainable, billing wise, monetarily wise, but also giving the patients what they need at the time they need it. So we have the pain therapist, we have nutritionist, because early on that's going to be the biggest, you know, hurdle to jump and then, moving forward, we have occupational therapists who are helping with things, and then we have PhD's. You know, further along, we can do autism spectrum. You know testing and diagnosis and things like that. So I feel like we've really kind of built it so that you know, through the whole spectrum what the patient needs at the time that they need it. We can help.
And I think, in terms of what our families are able to handle right, I can hardly make it to my own routine preventative medicine appointments right. And so for these families who have so many visits to make, the fact that you guys can kind of house that all in one clinic I think is extraordinary, because for most of our families they'll say, like I can't do it all, so I have to pick and choose what I'm going to do. I think that's really an important piece of what you guys are doing. I kind of had this thought that as our NICU population becomes much more complicated and the babies we send out into the general population are much more complicated, I wonder if, much like general pediatricians have made a subspecialty out of adolescent medicine, if there won't be a kind of zero to two specialty for this really high risk group of babies. I don't know from an institution like yours if there's any discussion about pushing that forward into the pediatric realm and saying, yeah, we can have a fellowship for the zero to two years.
So I did do a fellowship in that. So I'm actually I'm a pediatrician, I'm not a neonatologist, and I do agree with you. I think that this age group is getting a lot more recognition of needing to have more intensive follow up and care.
And the families need more follow up and care right.
Yeah, absolutely. So after residency I was interested in infant complex care, special infant care, and I knew I wanted to do a fellowship. But I didn't necessarily want to do a neonatology fellowship and I really admire all of you that do that. I just the intensive care I mean, what takes years off my life when I'm there. So but I was really interested in still taking care of infants and babies. So at Duke they have a special infant care fellowship that gives training on taking care of infants while they're still in the NICU and kind of that convalescent stage where they're not quite ready to go home yet, and also helping to give training on really complex care, discharge planning too, to really make sure that the discharges are really well done, and then following the infants as a transition from the hospital to home and also not taking the place of the pediatrician, of course, but giving a lot of that extra care that a pediatrician you know. I truly believe general pediatricians are superheroes that are among us because they do so much and also, in reality, knowing that you might have eight to 12 minutes at most per patient per day and that's just not enough to see a baby with a trach and a G tube and lots of meds and you know they're trying to figure out how to get the medical equipment delivered on time or make sure maybe they're mixing their formula incorrectly. And so Having this kind of care for infants after their discharge from the hospital, I think, is so essential to really have the best outcomes.
I Think, Mollie, this is so funny because it reminds me of when we were picking our fellowships and people said, oh, god bless you for wanting to work in the NICU and all the people who were going into the NICU we're like well, god bless you for wanting to work in the clinic, because it feels like we're always. I always say that the NICU attendings are always chickening out like I get to work in a place where I have continuous monitoring. The babies are here until I say that they can go home. They're here every day. I don't have to send them out into the world and hope that everything I mean, so the general pediatrician in the outpatient clinics, have my utmost admiration. Admiration because the job they're doing is is so hard and they have to have such a high sensitivity for any little thing to say, hmm, that's not, that doesn't smell right. And they see so many patients every day that If general physicians are listening, you have kudos to you all, Mollie. I wanted to go back to this idea of transitioning to home because to me, what's very interesting is the asymmetry that can happen at the time of transition, where For us in the NICU, it's like finally, this is over. The the journey ends, the ordeal is over and when, in truth, for the family, it it may not. I mean I. I realize that they go through Significant trauma in the NICU, especially if a baby is very sick. But going home is both a technical and an emotional it's a whole new set of trauma for sure, and we don't do such a good job as neonatalogists because we want to provide some relief and we want to say oh, that's it, you are done with us and things are going to go well now, but it is Going on such an arduous path. What has been your experience in terms of Framing the discharge home appropriately, all the while not providing false hope, but also not trying to demoralize the parents that are now very anxious of going home with a potentially medically complex patient?
You're absolutely right. I Say all the time to people that really, you know, in the NICU we think, okay, just get home, just get home, and then that's the end. But really that's when the hard work begins for the family and that's when the real kind of journey can start. And I actually know even just I can speak to this from a personal perspective. So when my daughter is born, she spent quite a lot of time in the NICU. I was going to do something totally different with my career and after this experience being on the other side of things was incredibly eye-opening. And she was in the NICU for about five months and had very stereotypical like roller coaster NICU course. And I Remember my husband he's also a physician and both of those were just, we just got to get home, we just got to get home and then, after five months we I'll never forget we walked into our, our living room and we looked at each other with our baby and we said why on earth did they let us leave the hospital? What were they thinking? You know? And we are two physicians and I'm a pediatrician, and so we already kind of knew how to navigate the medical system and we had a wonderful general pediatrician for our daughter and we had early intervention and we had all the subspecialty appointments that she needed and we had everything set up and even had home care nurses that you know were dedicated to coming to us like 62 hours a week and you know. So we had tons of support and also it was such a challenge for us to and and after seeing that and seeing that kind of gap going from this like very Like supportive NICU environment to being home and it's just us, it was really eye-opening for me to see. Like you know, there needs to be better Follow-ups after leaving the NICU and I know if we had had a transition home program, we would have really benefited from it a lot.
Mollie, I really appreciate you sharing your story because I think what you describe is as optimal a home experience is as we could hope for for our Patients. And we know that that's not the case for most of our patients either, because they don't have the medical knowledge about what are all the options available. Even sometimes we don't know what all the options are available, or they don't have the financial support, they don't have a family support. There's so many barriers for the optimal home environment for a medically complex infant or even a baby who's not that medically complex but Just spent a lot of time in the NICU and just has like a few things quote-unquote, a few things Going on. So I'm wondering for our units that don't have a robust transition to home Program yet. You know what are the, what is the bare minimum we should be doing? You know, given your experience, all of your experiences, collectively, to get families home in a safe mindset and a safe space for babies so much of the bare minimum.
It starts in patient with just educating the families on what they need, and Not so much just like doing a checkbox they know how to do a bath and they know how to change a diaper. You know like really helping families feel empowered before they leave the hospital too, and also giving them the resources that they need to know who to reach out to and when. So we always try also inpatient to connect with the pediatricians before babies go home. So it's so nice to make that initial connection before you discharge a baby, to kind of give a heads up you know this is what's going on with this infant and these are the things to be looking out for. And Also make like really empowering the families to know this is who you call when these are your appointments, and don't just kind of let them out, be like, oh, they'll figure it out or the pediatrician has it. I feel like I hear that a lot of those other pediatricians has it like you just also see like 40 iterations today, you know. So just making sure the families have all the resources that they need to really set them up for success. It's so important, I think.
Yeah, I think too. Just, you know, when you have a nurse over your shoulder and let's say your child doesn't poop for 24 hours, right, and the nurse is like that's fine, it's okay and they take care of it, whereas you know you get home and you're like, oh my god, the baby didn't poop for 24 hours, but there's no one over your shoulder saying it's okay, don't worry about it. Or they didn't take that much for the bottle and you know, getting over that you have to take so many. You know CCs at each feed and you know that type of like those types of things are are really hard for parents because you question yourself constantly and so having that, you know Sometimes I think those like when the parents do like an overnight before the baby leaves, like a day or two before, and they do like 24 hours of care and like a different room, you know it's helpful, it's hard to do but it's helpful, but it's. It's interesting. Some of the questions I've gotten are like why doesn't the baby sleep? I thought baby sleep, like things like that, and you're like Not really, you know, not, not yet, Maybe not ever. So you know it's. It's interesting to hear some of the questions that people have in the, the worries that they have at home, which is everything, whereas they don't have that person right next to them saying nope, that's normal, it's okay, don't worry about it.
You're reminding me of my own experience with my healthy term newborn. I was already a pediatric resident, I was a chief resident and I took her home and I was like I've never given a baby a bath. I literally have no idea why I didn't ever, anybody ever, asked me how to give a baby a Bath so I could look it up. So I I just can't imagine, you know the the stress and anxiety that we know our parents are suffering from and I think you guys have done it such a nice job of painting like the obvious benefits that it's a smoother transition for families. We were probably catching a lot more things for our babies that may otherwise go missed. But I'm sure you guys have some other Metrics and that you're following. We know that our high risk infant population, either Prematurity or medically complex for any reason, obviously of higher rates of readmissions, those that first viral season, even still mortality outside of the NICU.
So I'd love to hear about some of the data you guys have collected across the programs one of the purposes and goals of transition home was to look at metrics, starting inpatient, so we really want to decrease the length of stay for infants, and so that's one metric that we are following and we have seen just in the past couple years that we've been able to start the program, that we have been able to decrease the length of stay by at least four to five days, which is great, um, and then also, where you know, monitoring hospital readmissions, how many ER visits, to trying to really Be mindful and decrease overall health care cost as well. So that's one of the goals of transition home.
Yeah, and then just to add to that, you know, I think we also want to make sure that the patients families are reporting decreased anxiety and really feeling more empowered, and so we've been looking at other ways to kind of measure how our families doing holistically when they're home. And you know, all of this is is really nice and, you know, is very much a value add. But I think the most important factor if a Group is going to pitch this to their C-suite, is to make sure that you give your program legs and make sure that it's going to be a financially sustainable and viable option.
And and that's what I I'm really proud of, because I I'm not worried about these programs not being here four years from now- yeah, it's so frustrating that we have to like prove the worth, but the truth is is that there there is cost-saving benefits with a comprehensive program like this?
Yeah, and there's also referrals, right? So there's referrals from us to other providers as time goes on. Different therapy providers, you know GI consults, Neurology consults, you know things like that. There's there's a lot of stuff so that if within your hospital system you have those you know capabilities, You're definitely adding to different consultations within a system.
Yeah, I'm happy that we're getting Kristen involved in this conversation, because when we set this up and your role as manager, I was expecting to see somebody on the verge of depression because these programs are so taxing, and yet you are almost glowing, and so I'm wondering how are you doing this and why do you ever sign up for this?
It's a very good question, ben. You know I I love what I do it. It is emotionally Taxing, I can tell you that. You know, and I didn't know what I was signing up for. I love ambulatory practice management and I really loved the unique challenges around neurodevelopmental follow-up. But I had to kind of learn what it was and so I spent a lot of time just Early on in my career looking at like reading a lot of what was coming out of Canada, reading Basically anything that was ever done. You know any paper that was published really understand like, oh okay, this is a really valuable service and these babies are doing better. And also everyone is kind of turning their nose up at these programs, saying they just lose money, you're never going to generate revenue. They're really kind of lowest man on the totem pole when it comes to hierarchy in a hospital. And we challenged that a little and and looked at very basic ambulatory metrics of access, volume, opportunities for billing and coding and got very Kind of back to basics and I think that that was an asset to us early on. So but it was not without a lot of hard work, tears and oftentimes just saying like I don't know if this was the right move, but luckily our patients are very cute and everyone that's involved is so about the babies and our families and and so that Makes it easier.
And I'm only saying this because I've worked in our patient follow-up program and I feel like we should canonized the program managers because we're like thank the Lord that these people are here, because otherwise we are all Drowning. A lot of people ask us for the podcast. You know, like, how do you guys manage to do all these things on top of clinical duties? And sometimes the answer that we give is that we leverage a lot of new technologies that we've had, now being readily accessible for everyone, and I feel like this is something that every aspect of clinical care should Embrace. And I know that you guys are leveraging a lot of these new technologies and these new tools to make sure that you get good Outcomes, to make sure that your follow-up rates and that you can keep in contact with your patients. Can you tell us a little bit? What are you guys doing from that standpoint in order to maximize the benefits of your program?
Yeah, we're leveraging all everything possible in our electronic health record. You know, from building Custom questionnaires, you know which which in a larger healthcare system, is more challenging, because sometimes you really have to push, and In ambulatory Management there's it's hard to pitch anything that's very niche and explain to you. Know someone in IT why this is a necessary Thing, that we need a functionality because it is an outlier, but we've been able to get very specific types of questionnaires built in, utilizing patient reported outcomes and measures data. You know, dr Warren and I were just on a call to try to make our flow sheets, where we're getting Tracking all of our feeds and intake and output More effective, and so I think you know they can all speak to that. But really looking for every opportunity to streamline has been our, our goal.
Yeah, as you guys probably know, the notes are cumbersome. For any of these programs there, they're three to four pages long easily, and so you know I came up with smart phrases for you know things and and the Questionnaires that we came up with. We're working on having all the answers pulled into the notes that the parents put in, which will cut down on time as well, and so any anything that we can do to do that, I've smart phrases for every Developmental possibility of you know of things that they might need. You know coming up with for prior authorizations. We put it through you know epic as well, so that it pulls in all the information, so that we're not recreating the wheel every time we put one in, and so all of those things we really try to to use it to the maximum.
And Mollie, you were talking a little bit about the technology you guys are using for remote monitoring.
Yes. So I think one of the silver linings of the pandemic I guess you can say, is that I did give us the chance to see that you can do virtual care and so really push that forward it really did force that forward, and so that was something that I really wanted to focus on when starting the transition to home program, because once, like you mentioned before, you know, once families are home, they don't want to then have to run out to a doctor's appointment every other day, and so we wanted to have a virtually based program, so all the visits are virtual, and we also didn't want that to decrease access to care at all. So we partnered with the Brigham to have an iPad loaner program, so if the family doesn't have the technology available, we can loan out an iPad to them that has a data plan, so they don't have Wi-Fi. That's great, so not having access to that technology would not hinder them from being in the program at all, which is good. And, like Kristen was saying before, we have very frequent meetings with our IT and tech team too, and it I will say they're also great to work with as well. They also are excited about the babies, and it's just. It's Something that we're constantly, ever changing and trying to improve, because we started out with these Flow sheets that the parents, when they go home, they input data every day into this flow sheet that goes directly into the electronic medical record, into my inbasket and so you know. If the baby goes home on oxygen, they kind of can record like what the saturations are sort of averaging out over the day. And then if a baby goes home with an ingetube or a g-tube, they can put in, like per feed, how much they took by Bottle or how many times they breastfed and how much they got via their ingetube. We send the family's home also with scales too, so they weigh their baby every day. So that's, we're monitoring their weight gain and it's all these different things. Like the baby I mean, I'm monitoring it every day, but if the baby hasn't gained weight in two days, then I get an you know, an alert. You know let's check in with this family, see what's going on or if they lost weight. And I think I mentioned this before. But it is a multidisciplinary model. So even on the virtual calls it's there's a feeding therapist, a dietitian and myself, and so we're kind of looking at the whole of the baby and and we can even watch them take a bottle over the the call too, and we joke with the families. It's kind of like let's pretend you're in a documentary, you know, like fix your phone picture camera and it really, actually would think that it would be a lot more challenging than it is, but you can see a lot over these virtual calls.
Can you tell us a little bit about, like the actual logistics? So on any given day, how many babies are you monitoring, until, about what Post menstrual age or acuity Do you continue the like very close monitoring and then what does the follow-up look like after that time?
Sure, so I Work really taking notes so yeah, I was gonna say this is definitely An interested question for for for someone building their follow-up program.
Yes. So I work really really closely with the inpatient teams, because that's where it all starts. That's when you can recruit babies, you know, and so if a baby is approaching discharge, we have these weekly discharge rounds where everyone kind of runs through everybody in the unit like who's coming on the launching pad for discharge, and then we go ahead and tentatively start making their appointments when they're getting closer to discharge. Of course we know babies and they could have an event, and then you know and that's delayed and that's fine. It's all about being really flexible and fluid and setting up virtual visits too. It's easy to have the access to do these appointments because we do have staffing available five days a week, which is great. And so once a baby is discharged home, I reach out within the first 24 hours just saying, like, welcome to the Transition Home Program, how are things going? This is how you reach out to us. Families have access to a pager. They have actually most families really like to use the messaging system too and so they can send us messages so they have questions, and then they already have their appointments scheduled before they're even discharged home. So they know that there's that safety net available for them before they even leave the hospital. And then we, you know, on average I've been enrolling about like 20 to 25 babies a month into the program. We started enrolling our first baby back in October 2021. And since that time we've had 290 babies come through. So, and I also am kind of well, this is very helpful when I'm on service and to see babies, but I'm also like a one-woman show right now. So too. So I'm hopeful, you know, if we are able to kind of increase the clinical support, then we'll be able to enroll more babies. Like the goal is always to enroll more babies and to offer the service to anyone that is discharged from the NICU. And then babies usually have virtual visits, set up for two to four weeks, weekly visits, but sometimes we can add on an extra visit here and there if they need. And then after the visit they immediately go straight into the NICU follow-up program and they're seeing that in person there.
As we're getting to the data part of our episode, I wanted to make sure I circle back and ask Mila said this question because, as clinical neonatologists, we're often giving parents anticipatory guidance as to what do the outcomes look like for their babies, considering their hospital course, their degree of prematurity, if that's the case, and we have a lot of data to share with them. But you have a unique perspective in the sense that you see these babies after they go home and sometimes I wonder if, when I'm in the unit, if it's not maybe better that I don't see them, because I can focus and do everything without having this worry of all these other patients that I've seen and I'm like, oh my god, what if this baby turns out this way, turns out that way? Because everything we do in the NICU is geared towards long-term outcomes, and so I am wondering how has been your experience taking care of patients after they go home, seeing their development, the good, the bad, the worse, and then how does that then circle back to your care of the babies in the NICU on a day-to-day basis?
I would say that I try to be on the rosier side of things. I'm a very honest person so I also can be very direct. But I would say, most of the time the babies do better than I expect them to do, which is great. And then I also tell the parents which is 100% true that everything that happens at home is more important than all the stuff that happens in the NICU. Right, and we know that from lots of really good studies, and so I always tell them when you get home, you have to make sure that you hug your baby, love your baby, talk to them, read to them, make it a really rich environment, and that those things are so much more important than all of the little things that happen. You're on CPAP, you're off CPAP, you're on CPAP, you're off, you're intubated, you know. And so because those are the, or you gain weight one day, you don't gain weight another day, and depending on the anxiety of the parent, those are really important details and I always try to let them know it's really the bigger picture, that is the more important part and that really a lot of these babies do better than we think they're going to do. I can't always give that advice, obviously, but grade one, grade two bleeds and it's very upsetting and most of the time those kids, even grade three, bleeds. Those kids are doing so much better than they used to. A lot of our data is old at this point and I would say the outcomes you know when you look over all, like the VON data or whatnot and you like because we're a part of, like this New England follow-up network. So we have to go through our data and look at it and I would say the babies do better than I would have expected them to do from all the stuff that happened in the NICU neck, no neck. You know BPD. I think that they often do better than we think they're going to do not always, but often.
And what has surprised you in terms of the recovery process for these babies. I think we have these. Like I said, we have this data that tells you, oh, this is what the outcomes look like at two years, this is what the outcome look like at five years, and so on. But you guys see them frequently, and so I am wondering if this is a gradual progression that you can see in front of your eyes, or is this sometimes like it is in the NICU, where nothing happens and then suddenly the babies come back for the next visit and it's like, oh my god, like this is now a totally different child. How has it been seeing these kids in the real world?
I would say I've seen both. So sometimes you see the kid right away and you're like, oh, this kid is going to have issues or they make no eye contact and we're going to have to watch this kid or you can kind of see. But I would say sometimes we see kids and they're very jittery or their tone is really off, and then when we see them again in four months they look a lot different. So I think it depends a lot on the services they're getting and how much their parents are really doing at home, because that every day doing the tummy time and the exercises and all of that therapy that parents can do every day at home are so important and not just waiting for that once a month early intervention visit or every other week early intervention visit it's super important.
I think what you're mentioning into Ben's point about what we can all take from it, even if you have no desire to be in clinic is is our role in empowering parents, because I think so much of the NICU, even in the units with the best family-centered care, family-integrated care, I think parents still don't feel like the primary caregiver for their child in our current healthcare society system. But those babies need their parents more than they need any single one of us, and so you know how it is our job along the way to teach them that in terms of neurodevelopment, like they're the superstars, the rock stars, and they will lead you know the way they'll be their baby's advocate. So what do you guys do in the unit to start kind of making those connections for families so they can, like pick up the baton on the way out the?
door. We do have a growth and development unit, which is great. It's. There's such a wonderful focus on development there and it's really robust at the Brigham, where there's music, therapist and we also have like a reading program where we encourage the families to read to the babies and that so that starts that kind of plants the seeds there. I will say 90% of my visits with the Transition to Home program is providing reassurance and giving parents like you can do this, it's like you got this. And I think especially those first few weeks, that first month at home, is what's so tenuous too, to make that transition to like, be like. You know you did have a nurse around you all the time and you had this constant support. But you know what? We wouldn't have to let you go home if we didn't feel like your baby was gonna do great and we're here if you need us. And I think you know, especially those first couple of weeks, their families are reaching out for every little thing, like the poop was this color, you know. Or you know they spin up a little bit more now and just saying like that's okay. And I do a lot of saying like you know, in the NICU we were very much like you know, every three hours you need to eat and take 67 ml per feet and ball, and I was like no, it's fine, you know to do more, like every two to four and so kind of like D NICU fine, the parents is really important, and I think that's something that I really focus on, especially in that first month.
Yeah, and there's a lot of guilt that parents hold for right to when they have a child that's in the NICU and, you know, I think moms more than dads just because they feel like it's their fault that the baby was born early or that something happened or their body wasn't able to do what it needed to do. And so I really feel like making sure that they feel like they're doing such a great job, you know, and making sure that, like Mollie was saying, that they feel empowered and everything is great. You know, okay, maybe tweak this, tweak that, but really overall, look how great the baby looks. They're doing so good, you know. I think it's just so important and, like Mollie was saying, that that first month after they get home, that's I mean, I think it continues Don't get me wrong, because for sure we do it at every visit but I think that first month is really crucial for that and other programs that I've worked in we didn't see babies until they were three or four months old and sometimes the parents would just break down crying and just say it was so hard and you know, and then they just kind of tell you all of this stuff and they've just been holding it in, and this way then, at least along the way, we can give them that reassurance and, you know, help them with all the questions they have, which they wouldn't have otherwise.
Yeah, I love it's a good reminder that I mean the mental health of these parents predicts the long-term outcomes of the babies. So thank you for touching on that. We've spent a lot of time on the transition to home program, which sounds amazing, and I realize that there's this gap between kind of this, even with NICU follow-ups across the country, between this and kind of early childhood education where we know that our high-risk NICU population still has trouble. Even the babies who quote unquote do well getting you know to school age. So most I'd love to kind of hear about those programs as well. On the other end, which I think are pretty rare, yeah, we're starting it.
It's definitely a work in progress right now. So one of our neonatologists is also a DVP, dr Carmina Urda, and she really, really wanted this program and so we're working with her to really build it, and so so far what it has been is one of our days a month. We have these older children come. We have a psychologist who specifically really does older children is more of her specialty, and so they've been working with a lot of the kids who have autism diagnoses or other developmental problems to make sure that at the three-year point where they start transitioning to the schools, that they're getting the services they need, the IEPs are sufficient and that they continue services and or that they can get into a multi-disciplinary program for autism, as needed, so that they can continue their care. And so we've been working on that and really we're in the midst of developing it and really kind of getting it, the kinks worked out. But so far the families have been very happy with it, especially because the you know the weight to get into some of these longer term clinics is so long a year, year and a half to get in and so at least we can continue to give them that support and help, to help guide them until they can get in with that other clinic.
And certainly it's an area, it's a topic of concern for families. Even in the first weeks of the NICU admission they're asking about some of those long term outcomes and, in particular, an autism diagnosis, as I think it's gaining more attention in the medical community. How interesting.
My last question for you all is we've talked a lot about some of the great things that you guys do and how things potentially can go very well. I was wondering what is your role when things don't go so well and like, for example, a baby gets readmitted. I know that in the NICU if we hear that one of our recent discharges is readmitted, it almost hurts us because it feels like did we miss something. I am wondering if a baby gets readmitted to the hospital, what is your role in accompanying this family through that process? Do you have specific things put in place and how do you handle that generally?
With the Brigham. Specifically, if babies are re-enrolled or have to be readmitted especially if it's been a certain more than a week or so after they were discharged then they're readmitted to one of our children's hospitals in the area and not backed into the NICU, because the parents have such a close connection with the Transition to Home program. We always know right away if they've been readmitted. The parents will let us know and sometimes I also will get pages from the inpatient team too, from the different hospitals to say this is what's going on and I can help provide background of what the NICU course was like, why this might be happening now. But it is very much a collaboration of care with the different pediatric hospitals in the area and they know about us as well, and so we do everything we can to kind of set up the support for the families, what they need, so they don't have to be readmitted again. I'll say it actually hasn't happened a lot. If a baby has been readmitted it's for things that probably couldn't have been prevented otherwise. So because we are following the baby so closely, we get to have a baby to talk and when we readmitted for failure to thrive, because that's something that we can follow really closely through our program. But if it's like new onset seizures that couldn't have been controlled, that's different.
So as we're wrapping up, I actually have two last questions. My first is, in terms of all of us in our anticipatory guidance, what is the most common thing that parents ask about post discharge along the way, so that we can all be including in our anticipatory guidance? And two like what's still missing what are the things that if you could have anything you wanted in the clinic, what would that look like?
So okay, question number one. And I'll say question number one and then I'll throw it to Mollie. But I would say constipation and gas, that was my guess. Probably are the two most common. Yeah, Mollie, just agree with me if you do, but I feel like parents are-.
Like for all, of childhood right.
Oh yeah, yes, yes. Or, like Mollie was saying, stool change color, is this you know? Okay, that's the most common, for sure.
Yeah, I think that, and also reflux as well, that's a really big one. You know, we go from our inpatient side of fortifying with liquid fortifiers and then they go home with the formula powder fortifiers and that always is a change with the Jihul GI system. So that's. I think that's the biggest thing, especially in those first few weeks at home that we get, and I think Kristen has some great ideas on what's missing too as well from just administrative side of things.
Yeah, I really feel like you know, I know, in the clinic, the one thing, at least just selfishly, I would love for us to have is a social worker, I think, for our families and for our providers, and I think in a lot of ways we're all kind of wearing the hat of, you know, administrator slash clinician, slash social worker kind of at all times for you know, especially for for Dr Warren and Dr Woithiller. But I really also wonder a lot about the ability for us to partner more closely with families on health literacy. I think that there's such a gap on for families to understand things like how their insurance works, especially when we're talking about Medicaid, and that part has been really for me kind of a passion project for making sure that these families understand if they're on Medicaid, how does that work, what do they need to be looking out for? You know, what do they have to make sure they're aware of for things like their primary care doctor being listed correctly, because some of that is so administrative kind of red tape but then can impact their outpatient care. And we've just worked a lot to kind of partner with them and because that's a skill they're going to need for the rest of their child's life, especially with a complex infant.
Yeah, I double up on the social worker slash case worker. Yes, we do a lot of that ourselves. We're putting the prior OS, we're doing, you know, filling out the housing forms and handicap placards and you know those types of things and it definitely takes up a ton of time. That people don't, I mean I don't think I think parents appreciate it, but I don't think people outside of it appreciate how much time that actually takes.
They didn't teach us how to do any of that in medical school, right.
So even though that's like so much of medicine these days, Well, also I just want to say to I think the reason why these programs have been so successful is because of such the close collaboration between Kristen and ourselves. Like we bring the clinical side of things and she brings the administrative, like business sort of mindset, because that's what really makes things sustainable. I'm never going to pretend like I know how you know insurance works and reimbursement and codes and things. Another thing we didn't get taught in medical school, exactly you know and so if you don't have that connection with the admin side of things, it would make everything so much more challenging.
Yeah, we've also been incredibly lucky that our higher ups have been really supportive of us.
I wish that we could also, you know, have. I think a little goes a long way, but the one thing we've been really advocating for in our department has been amazing is really incentivizing and making sure that these programs are equitable. So things like transportation, parking vouchers, diapers for families when they come in I think all of that goes so far for families, and having more of that to kind of spread around is just. I've seen just a huge, the huge impact that it has for families too.
Okay, Melissa Moitheiler, Mollie Warren, kristen Sullivan. Thank you so much for making the time to be with us this morning. This was an enlightening conversation and I think Daphna has written a lot of notes that I feel like I'm going to hear about at our next division meeting. So thank you very much for that and congratulations on all the work you're doing. We will link a lot of the links and contact information to the program on the episode page so that if people have questions or want to get some clarification about how they can implement some of these things in their own unit, they can actually reach out to you guys. Thank you very much.
Thank you so much, so nice to meet you both.