Tiny Tots With Heart Defects: Practices and Promises of Advanced Neonatal Cardiovascular Care Martina A. Steurer, MD, MAS, a cardiac intensivist for neonates, discusses challenges and solutions in the treatment of premature and low-birth-weight infants with heart disease, describing how care has evolved and offering informative data on surgical outcomes related to gestational age. She includes a video illustration of NICU environmental factors that impact wellness and describes elements of programs to support neurodevelopment and cardiac health from birth through childhood and beyond.
They're gonna talk about uh a neonatal and cardiovascular central effect funds and what that is. Um I am as um Maria uh said, I am a um cardiac intensivist and I'm also a neonatologist. So naturally I'm gravitating towards being very interested in the neonatal cardiac population. And as you all know, Doctor Reddy, our head surgeon is uh very, I would say like nationally if not worldwide uh w world like internationally known um to be an excellent uh neonatal cardiac surgeon. So we get a lot of premature babies, um not just from in state but also from out out of state. And we are um developing and kind of like we started developing and wanna like progress to even like add more services to this, this neonatal cardiovascular center of Excellence. And that's what I want to talk a little bit about today. And uh so I just wanna go back a little bit. Um I think you can all hear, I have a pretty um heavy accent. So I'm originally from Switzerland. So this was where I did med school in Zurich and this was Zurich 2004 when I actually graduated from medical school and how the landscape of and this was not just Zurich, I just show you the picture from Zurich because it's beautiful. And, but that actually what happened that time in the field of um cardiac surgery was that child that there were barely any um pediatric cardiac I use. So this is the University of Zurich and, and it's in this like uh can you guys see my pointer Maria? Yes, I can see it. Ok, great. So um this is um at the adult hospital and the sorry, I'm on service. So I will I might get calls and this is a little bit unfortunate but this is what happened. So um this is that the university hospital, the adult part and the c and there was a adult cardiac IC U in this part and the children's hospital was about a mile away or it's actually still about a mile away down here. So what happened to babies who were born with congenital heart disease? They were shuffled from the university hospital to the children's hospital to take be taken care of then for surgery, they were put in an ambulance brought back to the university hospital where they got surgery and then stayed in the adult cardiac unit before being transported back to the children's hospital when they stabilized. So really the concept of having uh pediatric cardi IC U and children's hospital taking care of Children of of of doing that. The um congenital heart surgery at their institution is a relatively new one. This like 2004 is not even 20 years ago. So of course, it all changed, not just in, in Switzerland, but also in the United States. And um, in San Francisco twice the 2017, that's when I am F fellowship and as a neurotologist and um, cardiac critical care physician, I started to work in the pediatric IC And I think not just me but all over the country, people recognized how diverse a population is in the pediatric C IC or we sometimes take care of adults with congenital heart disease, you know, like 25 year old or even a 50 or last time we had an 80 year old and in the next room there is a baby and maybe this is a baby that's only 1 kg. So we go really from very little to very big and there this diversity is still there, although better than 20 years ago. But I think working towards more specifically catering to these different patient population is very, very important. And of course, since I'm working at a, at, at an academic center and we want to look a little bit on. Is it just me saying that or my feeling or is this really something that has been shown? And too sorry, this was a little bit too quick. Let me go back and let's see what happened. Um hm. Yeah. Um So, uh actually, there is not a whole lot of evidence out there. And this is also very interesting, this paper was uh was published in circulation 2014. So basically, not even, I don't know why it's auto advancing, not even um 10 years ago. And um this the and then it has been the first paper that looked into gestational age and outcomes in uh neonates with um a neonatal congenital heart disease. Meaning that gestational age has never been even used as a risk factor or used to assess how these babies are doing with congenital heart disease. And to, to that, to that fact, even um all the big databases, the national databases, they didn't even collect gestational age up to 2010. And so 2014, this paper was published, which was very well done and it showed as you can see here how your risk of having a, of, of dying when you have congenital heart surgery after surgery and declines up to 40 weeks and then increases again. Um I wanted to look at the same data but a little bit in a different way because I was really interested in not just in mortality but also in neonatal morbidities like, you know, like, um low gestational age with neck, neck IV um A higher grade, a higher IVH grades or chronic lung disease PVL or, or, or, and then on the right lower part, any morbidity and what this graph really shows you is that babies who have congenital heart disease, they are much more likely to have any of these um morbidities even at higher gestational age. You know, when you take care of a 28 week who has been, has had no congenital heart disease these days, really a lot of those babies or let's say 30 week, many, many of those babies are just fine and they do not have any of these severe morbidities, not so much when the baby has congenital heart disease, which is really crucial. And I think it shows how the neonatologist is important in the care of these babies. And it also shows how there is something special about these babies and we probably should move towards providing a very specific care to them. And this is another way of looking at the same data where we have babies with congenital heart disease on the like the the upper line here, like this one and then babies without congenital heart disease here. And you can see when you're born very preterm, you die no matter what. And when your term, you're practically pretty of keeping the mortality low. But where you see this, like the divergence of the curve is really in this like a middle gestational age there, right, between 28 weeks and about 34 weeks. So that's really the population that we as cardiac intensivist want to focus on other. And again, you guys all know that as a, as pediatricians, another important um marker is its birth weight and birth weight itself is probably not how we should look at it because birth weight is coated with gestational age. And when we talk about a low birth weight population, we kind of talk about that a heterogeneous population because it could be a preterm well grown baby or it could be a, a term growth restricted baby. And um when you look, when you look at C score for birth weight, that's when you get the better data because that preterm well grown baby would have a high C score for birth weight versus the term growth for the baby would have a low C score for birth weight. So um you use, you use C score for birth weight to assess that kind of like growth. It's almost like a marker for inter U growth restriction. And we did this study with the sts database kind of like again, inspired by the study about gestational age, we just use C score for birth weight and you can see here as well, right? I mean, and again, this is independent of gestational age C score for birth weight has a huge impact on post on on operative mortality. And you know, probably like the smaller the baby, the low the C score, the lower the C score, the more, more and more taxing or the more difficult the surgery is just technically So when we bring those two factors together, we really see that babies with ac score for birth weight that are uh as as one risk factors and then gestational age is the other one. So for example, a baby that's actually term uh 40 weeks but has ac score of minus three, the predicted mortality, which is this blue line, which you can see over here is about 12%. Now you look at the baby that's 34 weeks. But while grown with ac score for birth, almost um plus three, that baby also has a mortality of 12%. So it's really both of these factors that give us a sense of how well or how at at what kind of risk those babies are. Ok. So moving on a little bit after knowing from these few research articles that the car neonatal cardiac population is a very specific population. Um And I think that has been really a uh been acknowledged throughout the nation in the last few years. So the really the real goal um is to further divide up the C IC U into a neonatal C IC U. And then maybe one part could be an adult C IC U, right? Where we, we take the congenital adult patients. Um And luckily, we have are able to make some strides here at U CS F. Thanks to donations, very generous donations and thanks to the leadership who really thinks this is important and worthwhile. Um So we built what we call the neonatal cardiovascular center of excellence. And it has a few pillars and one of our most important pillars, the surgeon, then we have our neonatal C IC U, which I'll talk about. We have our grand program, then we do neonatal rounds and then after this church, we have healthy hearts and minds. So the surgeon and you all know, I mean, the surgeon is incredibly important because if we don't have a surgeon who can do a neonatal surgery or can even operate on preterm babies, there is no point of doing all of this. So this is doctor Reddy who is very sad that he can't give this presentation himself today because of course, he's in your where he always is. Um but he um is really nationally known to um perform surgery on premature babies and low birth weight babies. And this is one of his um uh papers that he published and he has really good outcomes and his s his surgical repairs are always um very, very um top notch. And I think that's the first pillar. Um It's also actually quite like we just right now have a baby in the unit that is 1 kg, it's a trunks or tios. And it's just amazing how, you know, he his repairs are always great. What we often struggle with is how to take care of this baby because the baby is premature. So there is one thing about the surgery itself and the repair. But the other thing is about how do you provide intensive care to these babies? And so we often actually, Doctor Reddy is not like the surgery is not the problem. It's actually the medical care that comes to its limits. So what we did is we really want to move eventually to have a neonatal C IC U right now, part of our CIU is called the nest nurturing environment for small hearts. And that's where we record all our babies. Unfortunately, we do what our eventual goal will be is to admit the babies right after and birth to that place and to discharge from there right now, they still are most of the time admitted to the CN because of a bed, a bed um shortage, we have eight beds in our um nest and they're always full with uh neonates. But we try to always like bring babies up from the nurse as soon as we can and keep them in the nest as long as we can, they have like these like like murals where it's clear that this is a separate um a separate um part of the IC. We try to keep it very calm. You can see there's like not much in the hall. We try to keep as much distraction out. We really try to kind of emulate an IC N environment and they try to do care times, touch times lights as as little light as possible, quiet talking during rounds surrounding in that like closing the windows to the door so that the baby can get rest. And that's why this is important. So I've often much busier in the other side of the unit. Much more consultants, much more like talking. Um So this is a great way of of having a separate um mindset for our little babies. Um Oh, I do, I just said I had no video. So this is a video I'm having for um one of our little babies like look at this um is a 24 beer who um is 650 g at birth weight. Uh at birth did not have complete steroids. Um Was it that twin transfusion syndrome was a donor and had ad TT A and the VSD and I mean, just without congenital heart disease, the survival of that baby might not have been great, but congenital heart disease was probably dismal. However, we I think with this baby, we picked the right time again. Doctor Red did great surgery and oh, hold on. I'm gonna start this video one more time. Um So this you can see the nest here and this is one of our rooms where this baby is uh located. And um you can see baby still on ino you can see the baby is on the ventilator but has and it's actually on CPAP. You can see the baby is being fed with this like chimney. See, the heart rate is 140 and I try to show here that F I two is only 40% the CO2 there, the transcutaneous looks pretty good and this is the baby like nicely bundled up with his CPAP with her CPAP. Um, and yeah, she's doing great. So hopefully we'll be able to, um, get her home. Um, so courting the baby is one thing, right? And having that mindset is one thing but and having the surgeon is another. But then I think there needs to be, there need to be more um more uh pillars to really make a difference. And so this is our grand program and this is actually interesting because we started that about, I would say 2018 way before the cardio uh the cardiovascular center of excellence was emerging and, and it really came out of nurses and physicians who want to do something good for these babies. We were like, what can we do to increase breastfeeding, to increase and to increase the touch, time adherence to do the, to position the babies better, you know, like how many times have I seen babies like splayed out? Like not in that, like, like um developmentally correct, like bundled position in the C IC U. And I think people really wanted to make this better and this came out of really just a few physicians, few providers, a few nurses working together and we came up with this growth and neurodevelopment. So it's C grant grant program and we have these four bundles that we still um use very much the care bundle, the parent bundle, the feeding bundle like Comfort bundle. And we do like we add new guidelines to those every couple months. We add new like uh projects. For example, we did a great holding project where and we really promoted the parents to hold their babies, even skin to skin, even if there are lines like R A lines like invasive lines in the babies when they are also when they were intubated to really promote bonding. We actually did way better, way better now with like pre op feeding or feeding, like providing breast milk or or like supporting the mom to breastfeed in these like complex babies. So all of those things and the care bundle, we talk about um touch times like positioning comfort bundle to like try to avoid updates, try to avoid um benzos, but give a lot of like sweeties and maybe do a massage therapy, uh acupressure and services that we added for these babies and are pretty uh readily available these days. Um So with the, with this grand program and these are a few nurses for a few impressions. So you see the baby, this baby is like bundle is a tiny baby I think was like 0.9 kg. So it's like bundled correctly in a in a correct position. Um when the light needs to be on, we sometimes put um um something over their eyes which we tried not. Uh this was mainly there for the picture to um comply with uh uh um uh hippo. Uh And then on the upper right, you see um some nurses um uh practicing a resuscitation uh specific to neonate um on a, on a uh the debate on a doll. And then on the right lower hand side, you see um uh Mobil that's kinda up there to try to stimulate the baby's um redevelopment. Um And then, and this, I, I talked about this about the holding. So we, we put up this like holding tree where the parents could put like I could put a little um heart up if they held their baby and can say the date. So to like make it, make everybody like really making excited about holding the baby. There's another one that's pretty nicely bundled in a correct position. Um And then to reinforce this grand uh the grand program, we do grand rounds once a week. Um They happen at Mon on Monday at 1 p.m. and the parents are very much encouraged to um participate with a little pamphlet that they get and that they know this is happening. Um And so they um yeah, they, we, we are, we did were able to hire up for or are in the process of hiring up for lactation. Support. So having specific dedicated lactation support in the C IC U, not just the IC N and, and then we have child life and developmental support or I showed you like different like things um to really um enhance their development. And we have uh we are trying to hire more um ot uh people occupational therapy to help with feeding. And we did a big pro uh project on pre and post op feeding where we really want to pro promote po want to promote breastfeeding. Then PT also teaching the parents of how to do PT with their babies. We have a really great infant massage program and we have a really, really great music program and on Grand Grants, it's discuss which service which baby um would benefit most depending on where they are, you know, when they're still intubated with open chest, that's less of a concern. And but then when you're extubated and maybe they struggle with a specific part of this, we, we kind of pull services from there. So that's one thing that happens on Monday and then also on Monday, but early in the morning and we do neonatal rounds and the difference to grand rounds is that the neonatal rounds are really uh more um medical rounds. They are the what and all the providers that are on this slide. So, a neonatologist, ac T surgeon, uh the clinical nurse specialist, uh cardiac intensivist and then some um RN champions that are um interested in this population are taking part and we round on every baby in the hospital no matter where the location. So we go to the IC N to our pre op babies and then we go to the C IC U and to the CTCU to round on our post op and uh neonates and we discuss um surgical plans. It's a really great, we set the stage for the week and I think um everybody really likes it because we set the stage for a week. We look at specific things that impact or that um are important for the, if we look at the growth curve, we look at um respiratory support, we make some recommendations of how to be in respiratory support in this population and to really promote their growth. Um And then also like if there's specific neonatal factors, especially in the C IC where we don't always have a neato like bilirubin or anything we are there to help with that as well. Um Yeah, so I, oh yeah. So surgical planning, we talk about surgical planning timing, we talk about lines, we talk about nutrition and feeding, we talk about respiratory support and weaning and about neonatal uh specific neonatal issues. So what then the last pillar I would say that is up and running right now is the U CS F Healthy Hearts and Minds program H two M. Uh it's led by one of my close friends and colleagues shape Randi and she couldn't be here today. So I will present this part for her. And so uh she really is the one who made this work. Um and it is um hard, right? Because it's um it's, it's financially challenging and it's hard to get the U CS F to commit to a program like that. So basically, they will, what they do is they are seeing babies with congenital heart disease after discharge and do neurodevelopmental follow up similar to what happens in AC N with preterm babies. Um And then also, Doctor Prandi is very involved in co which is a national uh data registry where she is collecting information about these babies. Um So you see here, it's high risk infant follow up, which is um championed by the IC N at six months, eight months and 30 months and then it's healthy hearts and minds between four and 18 years. Um And again, like we try to already like instead of just starting with high risk infant follow up at six months, we would already, we like to already think of how we can promote neurodevelopment and in the neonate when the baby is in hospital instead of just waiting until like six months of life. And so here this is, this is actually if you have a patient who is coming, who has not been hospitalized at U CS F, you can refer to this program as an outpatient, like you can refer to talk a lot, a little bit of uh uh at the end of about this, but you can't refer to the neonatal cardiovascular Center of Excellence because every baby who is actually at U CS F with congenital heart disease automatically goes into that program. But if you have a baby that comes from a different hospital and you would like to refer this is how to refer to healthy hearts and minds. So is this all are we gonna, no, this is hopefully not all. I mean, you know, I'm like mid career, I would say I still have many, many years to come hopefully in the hospital. So I would like to see this move and I have a very clear future, future vision. The question is, can we implement that or not? So what frustrates me right now most so we, we have this neonatal CS U the nest where we call the babies. But as I said, we never have enough beds. They, so they go, they go to the NICU pre op, then they go to the CS U, then they go to the step down unit and sometimes when they get transferred, they go directly to the CIU but sometimes also they go to the NICU and from labor and delivery. Sometimes they go directly to the CIU but sometimes they go to the NICU and the worst of all, sometimes they but back and back and forth because we have such a bad crunch. So and then sometimes they go directly home, sometimes they go to the step down, sometimes I get your back transferred to another hospital. So a lot of arrows on this on this slide still. And I think we could streamline this way, way better by doing this. And I think this would be um what we really want to do by building AC A neonatal C IC U that is really, really modeled similar to the IC N where we admit the child after birth with congenital heart disease. And we keep the baby till the baby can go home at the end. And so through it, the entire hospitalization that would also then really, really play nicely with uh prenatal counseling or we could show the unit people could meet the team. And I think that's what I would like to move forward to. Um And then along this line where we said it goes from pregnancy, right? It starts before the baby is born to post discharge care. And what we have right now is really the nest. So the neonatal IC U cording, we have the grand round. We have the neonatal rounds all in this like prema a little bit of pre but mainly post up here and we have healthy hearts and minds. So what we really would like to work on is all these red things down here when I started a pre natal counseling service with like like you know, already finding out what are the mothers of issues with regards to feeding, breastfeeding, then admission directly to uh to the neonatal CIU after birth and then mental health services for parents so that they can be supported while the baby is going through through such a difficult medical time and maybe classes for parents where they can also like class, take class together about infant massage, about acupunctures, things like that. We do like to increase our PTOT and lactation support which we are working on. That's actually happening. Um And then um ask the Children go home to have mental health health services and educationally and so on, set up so that we can really follow them and through this entire like growth. So I said um no need to refer specifically to the neonatal cardiovascular center of Excellence and every neonate with congenital heart disease will be automatically part of it. So we do not like when, if they go home and they are admitted at three months for a DS T pair, they would not qualify for it. It's really babies who need surgery in the neonatal period. And remember a mh two M healthy hearts and minds. Um I think if you have see uh you know about one of your patients moms like who's pregnant with a fetus with congenital disease, maybe mentioning the program that would be amazing so that they are aware and can ask questions from the get go on. Um And I would love to, to hear if you have good or bad feedback about this and what, what the parents um say, I would love to, to know so feel free there is my email would love to talk, get your input. I think it, we cannot always say you see a completely different side from the family and the Children. So I would love to like stay in contact and know more about um your experience with this and that's it.
