On this episode of Healthful Woman podcast, Dr. Fox is visited again by Annemarie Stroustrup, MD, MPH to discuss the topic of peri-viable birth. Dr. Stroustrup speaks from her experience in the NICU.
“Peri-viable birth: The NICU Side” – with Dr. Annemarie Stroustrup
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Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field, to help you learn more about women’s health, pregnancy, and wellness.
Annemarie, welcome back to the podcast. It’s been a couple of years, how’re you doing?
Dr. Stroustrup: It has been, it’s good to be here. I’m doing great. How are you?
Dr. Fox: I’m wonderful. Thank you. You know, last time we spoke it was April… Well, at least we spoke for the podcast. It was April, 2020 and COVID had just hit, you were running the NICU at Sinai. It’s a disaster over in the hospital, so a lot has happened since then. What are you up to?
Dr. Stroustrup: Yeah. No, it’s been a busy couple of years, so thank goodness we are not still in April of 2020, that was a bit of dark days for us. Things have been looking up. Since that time I’ve actually changed institutions. I now work for Northwell Health, so I’m based out of Cohen Children’s Hospital, but work with the health system, which has 10 hospitals that deliver babies. So a very large delivery service and eight NICUs. So it’s been fun kind of moving into that very large health system and seeing kind of how we can provide good care across a pretty big geography and a lot of different moving parts. And then I’ve been, you know, still busy with teaching and research and all those other things that are part of my life that are… It’s been good.
Dr. Fox: Wow. Amazing. Well, we miss you at Mount Sinai, but are happy for you to have moved to a massive position over there, which is great. So, you know, you’re just one step closer to world domination, which we appreciate. We’ll get there.
Dr. Stroustrup: That’s obviously the goal.
Dr. Fox: Yeah, absolutely. So, you know, we’ve been doing a series here on the podcast on preterm birth and we just sort of transitioned into this periviable preterm birth. On last week’s podcast, Jessica Spiegelman joined me and we sort of did an intro to periviable birth. Actually it was two weeks ago. So, I wanted to get a perspective from a neonatologist from the NICU side, because obviously a lot of this ends up being NICU care afterwards as opposed to pregnancy care. So, I was curious just to start off for our listeners, as a neonatologist, you know, someone who works in NICU with premature babies, in your mind, in your colleagues’ minds, sort of what is even the earliest that a baby could survive?
Dr. Stroustrup: Yeah, that’s a great question because it really is a bit of a moving target, and part of the reason that it’s a moving target has to do with sort of all the things we really focus on when we talk to families who are facing the possibility of preterm birth. And that’s because there’s a lot of sort of very personal decisions based on personal family values that come into sort of determining that point of viability. So most places in the United States, most places in New York would consider 23 and 24 weeks as kind of periviable, where there’s a lot of decision-making to be made, meaning that what the family wants to do is really, really important to what the medical team person is.
Twenty two weeks is kind of emerging as sort of the lower limit. It’s not sort of standard for us to really talk about survival at 22 weeks because the survival statistics and the survival without disability are pretty difficult conversations to have, but I would say that the most immature babies I had taken care of had been born in the 22nd week of pregnancy. But 23 and 24 weeks is sort of a more standard conversation.
Dr. Fox: Is there a gestational age below which you won’t even, like, put resuscitation on the table, like, even mention it or offer it or talk about it?
Dr. Stroustrup: Yeah, in the United States it’s not really offered at 21 weeks. There’s one hospital in Japan that has published small series on resuscitations done that early, but the outcomes are really not very good, I’ll be honest. And, you know, the outcomes are so bad that there’s a lot of discussion about what is, you know, fair and safe and reasonable to try to resuscitate a fetus below, you know, some people will say below 22 weeks and some people will say below 23 weeks. And again, it’s a moving target based on, you know, what you think you can do successfully.
Dr. Fox: Right. And then you mentioned before 23 and 24 weeks as a time when there’s a lot of decision-making. I was curious on the upper end of that. Is there a gestational age above which, like, decisions aren’t even sort of brought up, meaning like, we’re definitely resuscitating this kid one way or another?
Dr. Stroustrup: I’ll say again, there’s probably no hard and fast line because every situation is different. But for a fetus who has been developing normally, good growth and no congenital anomalies and, you know, everything’s going fine, and there’s the likelihood of preterm birth at 25 weeks or above, that’s something that we typically resuscitate. And the reason for that is that from an ethical standpoint, that’s a fetus that will become a baby that is actually pretty likely to survive and pretty likely to survive with a pretty normal life. So, that’s kind of why that 25-week mark has been picked. But for every gestational age there are other mitigating factors, and if there’s something else that’s been, you know, really compromising the ability of that fetus to survive in a, sort of, healthy and normal fashion, then that’s up for discussion as well.
Dr. Fox: Right. I think it’s, you know, the medicine is so complex and difficult and evolving, and I’m just trying to give our listeners a sense of how layered on top of all that is the ethics of what’s going on and sort of the thoughts that, you know, is this too early and what does that mean, too early? Like is it inappropriate or is it just futile? And sort of, you know, later in gestation, do parents really not have the right to say, you know, don’t do this or don’t do that? Like, and, you know, because there are certain things you can withhold from your children medically and certain things you can’t sort of, you know, ethically, or legally, or morally, however you wanna look at it. And these are really sort of complicated and difficult things to think about and to work through, but this is something that, you know, you guys have to do.
Dr. Stroustrup: Yeah, it is really difficult and I think that that’s why it ends up being a case-by-case conversation, you know, in-depth conversation with each family because it’s really important that everybody, you know, have the same level of understanding about, sort of, what we’re up against. And what we’re really up against is human development. So, I would love to be able to resuscitate babies, you know, as early as the baby needs to be born, but the reality is that if the lungs aren’t developed enough, that’s often sticking point. If the intestines aren’t developed enough so we can’t feed the baby, if there’s congenital anomalies involved, if the baby is so, so, so small that I don’t have equipment small enough to manage that child, then, you know, we’re up against the problems of I just can’t do it no matter how much I want to.
And that’s sort of fundamentally what we’re talking about in each particular case. Each case being subtly different in one way or another. And then when you get to the point where I know that I have the equipment that I can use, I know that the baby is developed enough, not all the way there, there’s a lot of development that happens outside of the womb once the baby’s in the neonatal ICU, but enough that I can manage that baby and I can get oxygen in and carbon dioxide out and food in and growth to happen and all of those things, that’s really where we talk about it being ethically right to resuscitate. And, you know, and I think the point of development when those things all come together are kind of that 25, 26, 27-week period. And we think about a week being a short period of time, but on the developmental scale, it’s actually really critical.
And in those periods of time you really talk about days mattering, but you can have a baby born at 25 weeks who comes out crying on their own and screaming and they may need a little help, but at that point, I think most people would feel it would be unethical to not provide that little bit of help. Whereas you can have a baby born at 23 weeks, where the baby doesn’t breathe spontaneously and you can move heaven and earth and use every piece of complex equipment that I have, and you’re just not gonna be able to get that baby to survive, no matter how much you want to.
And so those are really the discussions we have about how invasive do we wanna be in our trying based on the likelihood of success. And around, you know, 25 weeks and up, again, for a fetus where there’s nothing else going on, that’s usually relatively clear that our effort is going to yield something good, whereas at 23 and 24 weeks it’s a little cloudy, you know, we’ll try our best and hope for the best, and that’s about what we can say, is that, you know, sometimes it goes well and sometimes it doesn’t. And that’s not for lack of trying or, you know, lack of smarts, or it’s not the baby’s fault, it’s not the mom’s fault, it’s just that the development wasn’t there to be able to support, you know, long-term survival at that time.
And then below that, you kind of get to the point where no matter how hard I try at 21 weeks, I am not gonna be able to get this child to survive. And that’s, again, just the limit of where we are with our medical ability at this point in time.
Dr. Fox: Obviously these conversations are horribly difficult to have with families in this situation. It’s just a really tough spot to be in for everybody. Does it ever really come down to ethical dilemmas? I mean obviously, they always, you know, they present these cases in a sort of, to present an ethical challenge, but usually, they’re hypothetical, right?
Dr. Stroustrup: Yeah.
Dr. Fox: Does it come up practically that they’re sort of like these ethical dilemmas and you have to call in an ethicist and, you know, like, people or is it just sort of like, you know, usually after we all sort of figure out what’s going on, the decision’s either pretty obvious or it’s pretty obvious that we should have the parents make the decision of what to do?
Dr. Stroustrup: Yeah. You know, I mean, every hospital has an ethics committee who is available for these sorts of conversations. I would say it’s very, very rare to actually have to involve them in any situation that’s like adversary. I mean, we typically work really hard with families to be able to have conversations. And these conversations are long and they’re not one-offs. They’re, you know, a typical prenatal consult for someone who’s threatening delivery in this period of viability, you know, can be an hour the first time and then you go back the next day. You know, it sort of depends both on how much time you have because of the medical situation. Sometimes the delivery has to happen or baby just comes, but, you know, I think it’s really helpful when we are able to have these conversations ahead of time, and if not, we just continue the conversation after the baby’s born.
You know, neonatology, our default tends to be to do the most we can if we don’t have different direction from the family to give us time to be able to have that conversation about, you know, what do you want for your child? But that’s really where it comes from, is that we start out by talking about what the family’s goals are for this fetus, what the goals are for their family. Because having a baby who’s very preterm, who’s going to be in the NICU for a long time, who may very well have some special needs at the end of it, you know, that’s an impact on the family conversation, not just on this particular individual child.
And, you know, families typically come in with some understanding of where they are on that spectrum, what they want, what they value, and if they haven’t thought about it, you know, we hopefully can give them a little time to think about it and you frame the questions and say, “We’ll come back and talk again tomorrow and see where you’re at.”
That’s how I approach it. That’s how my team typically approaches it. I think that’s a very automative approach nationally, is to provide information, framing of the question, and then really help the family work through what will be best in their situation.
Dr. Fox: Right. So, how does that go practically? Meaning, what are the types of things that you’re discussing with the parents? You know, she’s still pregnant, let’s say twenty three and a half weeks, water’s broken and there’s a pretty good chance the baby’s gonna get delivered the next week, let’s say, give or take. I mean, how would you sort of enter that conversation, and what kinds of things would you like to make sure to, you know, discuss or ask or cover?
Dr. Stroustrup: I typically start actually asking the parents about them, right? Like, it’s very helpful for everybody to know, you know, where everybody in the room is coming from. So, you know, I’m a neonatologist, I’ve been doing this for 20 years, I’m here to provide you with information about what the NICU stay will look like and what some possible long-term outcomes are of that NICU stay for the child and for your family. And so tell me a little about yourself, you know, what’s your backgrounds? What do you do for a living? Do you have other kids? You know, where are you living? What’s the story? Because that helps kind of bridge that gap in terms of bringing together kind of those values and that understanding and that sort of mental plan. Because having a baby who’s very preterm is very different than having a baby at term.
And most people get to that point in the pregnancy. And unless it’s been a super complicated pregnancy the whole way along, you know, up until yesterday this family may have very well been sort of planning the baby shower for, you know, a month and a half from now and planning on having a term baby and the baby’s gonna come and then you’re gonna have to tell them to leave and, you know, put the baby in daycare, and that was like what your thought was. And now suddenly it’s very different.
And so we start talking about what that very different will look like and what, you know, the usual length of stay in the NICU for a baby born at 23 weeks is months and months, you know, babies stay until their due date or beyond. So that’s a frameshift about what it’s like to have a loved one in the ICU for that length of time.
And then we talk a little bit about what, you know, common disabilities are for children who are born this early, that, you know, even with the best medical care, there’s still long-term health consequences being born that early. Basically trying to get all the baby’s tiny little organs to work before they’re ready, and they have to grow at the same time and that leads to things like chronic lung disease or bleeding in the brain or, you know, problems with vision, problems with hearing, possibilities of cerebral palsy, and what that looks like on a longer term.
And it’s difficult because none of those are guaranteed. You know, there are babies who are born that early who don’t have those health problems at the end of it. But I think that we talk about best case scenario, we talk about worst case scenario, and we talk about what the family, you know, kind of sees for the future of their family in this situation.
You know, in some people’s view that is a lot of suffering that they don’t want their child to have to face. And in some families, the risk of some suffering and then death is too high, and so to them unacceptable. And for some families, you know, they really just wanna do kind of all the intensive medical care and hope for the best. And all of those are perfectly reasonable desires. And I think that part of our job in that prenatal counseling period is to try to, again, help families frame it, you know, so that they can bring their family values and their personal values into this really difficult situation, and make sure that they’re making a decision that’s the best for their family.
Dr. Fox: Yeah, I was gonna ask you about that specifically because, you know, one of the, you know, in medicines is not obviously just true for the conversation that you’re talking about. There is the capacity for one of the doctors, let’s say, to frame the conversation in a way that clearly choice A is gonna be better than choice B or vice versa. Meaning you could walk in through with them and say, “Ugh, this situation’s pretty hopeless, like, I can do this, this, and this, but your baby’s gonna suffer a ton and there’s gonna be a very high chance of he or she not surviving or being really, really sick enough.”
Or, you know, you can take the same situation and say, “Hey, we’ll try everything and sometimes it doesn’t work out, but sometimes these babies do great and there’s hope and we can do this.” And you can sort of massage it in a way to sort of get the parents to do one thing or another, either intentionally or unintentionally just based on your own sort of your own thoughts on this.
Number one, I’m gonna ask you how do you stay neutral in a sense? And number two, what do you do with the families who really just don’t know what to do? Right? And sometimes in other situations you start neutral and then you sort of, all right, they’re gonna need some help here to go one way or another. How do you do that? This is tough stuff.
Dr. Stroustrup: It is. And there are people with more training than me out there who are probably better at it than I am. But I think fundamentally, you know, everybody tries to be neutral, but everybody’s a human being, right? And so, that is a difficult thing. The reason why I start with the family and getting to know the family and talking before I even talk about a whole lot of the medical stuff, about what their vision is and what their values are, is because that really should be the guiding principles. And then you present the information as objectively as you can, and oftentimes we’ll present, you know, outcome statistics for babies born at this gestational age nationally. We can present those statistics locally at our institution, and try to, again, explain what those statistics mean because to say that there’s, I don’t know, a 40% chance of survival, what does that mean? That means 6 out of 10 babies in this situation would die. You know, there’s different ways of sort of framing that statistic and making sure that everybody’s on the same page.
But I think fundamentally we have to provide the information that we can provide and then hopefully help the families talk through it so that they can figure out what they think they should do. I mean, I think, you know, certainly, people have said, what would you do in this situation? And that’s a difficult question because I’ve not been in that situation, I’ve been lucky. And, you know, I’ve certainly also done this job for long enough to know that I am constantly humbled by being wrong about what I think will happen to any individual patient.
You know, there are fetuses who, you have this conversation and there’s all sorts of things that are challenges, and the baby makes it through all of them and ends up, you know, inviting me to their fifth birthday party, and it’s wonderful. And they’re also fetuses where you actually think it’s gonna go pretty well and then all of a sudden they get some bad infection and that’s that and they don’t do well. And so I think that it’s very difficult to predict the future, which is really what everybody would love you to be able to do in these conversations, and you just can’t do that.
And so, it’s similar to, you know, conversations in other stages of life when you talk about an elderly relative, you know, when you’re talking about end-of-life care at the other end of the spectrum. The conversation’s actually pretty similar. I think here the difficulty, there’s a couple of difficulties with it obviously at any stage, but here, most parents are not expecting to be having this conversation about a potential child, so nobody’s prepared for it. Whereas if you’re talking about a 90- year-old grandma, there’s a little bit more of an understanding and you can’t have any input from the person themselves. Whereas again, if you’re having these conversations at the other end of life, you can often talk about what would the person have wanted for themselves, and obviously, you can’t do that here. But they’re really fundamentally very similar conversations to those that are happening sort of in any potential end-of-life situation in medicine.
Dr. Fox: Do you find that statistics are helpful for people? Or and how many people… What’s the statistic of how often statistics are helpful for people?
Dr. Stroustrup: I think it really depends on the family. You know, you have some families that are very analytic and really wanna know. There are some families who do much better with gestalt. And I think that the most helpful thing, I think genuinely, is however we can convey to the family that this is actually going to be really hard, you know, there are people who come in with stories of, you know, my cousin’s aunt’s best friend’s sister had a baby who was more immature than this and did great. Like, that may very well be true and that’s wonderful, but you know, that doesn’t also mean it was easy.
Dr. Fox: Right.
Dr. Stroustrup: And there’s varying definitions of great and some of those definitions would be wonderful for your family and some of them might not be. And that’s okay. I think that’s the other thing that we try to make sure we do, is give families permission to kind of really think deeply about what would be great for their family because there’s a really wide range, you know, what the definition of a thriving child and a thriving family is.
And that’s okay, you know, we’re allowed to have those differences in this world, and I think they’re real, but it’s difficult for people to come to that, especially when you’re talking about it, about what was yesterday supposed to be a normal full-term baby.
Dr. Fox: Yeah, I’ve found that… You know, I’m a statistics guy, I love stats, but, you know, it’s interesting for the people who don’t want statistics, like literally the last thing they want to hear are numbers, it’s like the opposite of helpful. It’s not even unhelpful, it’s like negative for them. On the other end, for people who want statistics, the worst thing you can do is not give them the statistics, you know, because then they’re like, “Give me a damn a number.” They’re like, “I wanna know the number.” And it’s just like, it’s really, you have to sort of ask them like, “Do you want me to give you statistics?” You know, “Do you want numbers here? Do you want percentages? Do you want likelihoods?” And they’ll tell you like, “Oh yeah, please.” And others are like, “I have no clue what those mean, they don’t help me at all.”
But it’s hard because sometimes we get it wrong. Sometimes we’re like yapping numbers at people and they’re just looking at us like, “What are these people saying?” And other times we’re sort of giving them this like whole song and a dance and they’re like, “Dude, just tell me the percentage and I’ll figure it out.” It’s a real art to try to, you know, individualize these kinds of conversations with each person or each family or each day, they may want statistics one day and not the next day. It’s hard. Tough stuff.
Dr. Stroustrup: Yeah. And sometimes you’re talking with, you know, most often you try to have these conversations with both parents in the room and sometimes they want different things they’re different people and so it’s challenging. I must say, I rarely lead with statistics. I find that they’re, particularly early on, they’re not helpful. They’re more confusing than anything else.
Dr. Fox: Wow. So, just since we’re talking about confusing statistics, what are the statistics like? Meaning what is a sort of a general sense of, you know, babies born in, you know, 23, 24, 25 weeks, you know, number one, the chance that the baby would survive at all, and number two, that the baby would survive with not severe complications. Again, not exactly being able to define what makes something severe versus not severe, but whatever.
Dr. Stroustrup: Right. So, that’s actually a surprisingly difficult question to answer because it is such a moving target. So, there’ve been some great research studies done looking at outcomes at particularly 23, 24, and 25 weeks. The NICHD, a number of years ago… Sorry, the National Institute for Child Health and Development and the NIH put together a study where they have actually like a calculator and you can put in the estimated birth weight, and whether it’s a boy or a girl, and what the gestational age is, and whether they got some of the things that you guys do before the baby’s born that are really helpful, like whether steroids were given to them. And you can get an estimated survival and estimated survival without severe disability based on those. But those data are drawn from studies that are now kind of old. They’re, you know, 15, 20 years old, and we do a better job now than we did then.
And so, it’s a little bit difficult to kind of keep up with where the clinical care is when you’re looking at sort of research-based statistics because there’s also always that few years lag time. But in general, sort of when you’re looking for big ballpark numbers, if you’re talking about say 24 weeks, approaching half of those children survive, and then, you know, in terms of disability, the rough guide I typically use is about a third, a third, a third. So, a third have really severe disabilities, a third have more moderate disabilities, and a third have either no or mild disabilities.
And I think that, you know, then talking about what that means in terms of what is a disability, if it’s mild, moderate, or severe is important because we talk about mild things being things like learning disabilities, behavioral disabilities that, you know, are certainly not life-threatening and are actually pretty common, but that are really impactful for the family.
And so moderate and severe where you have real motor difficulties or problems with hearing, problems with sight, blindness, deafness, those are obviously more severe, but for one family or another, some of those types of disabilities may be more or less important. So, I think that that’s also kind of an important part of the conversation.
And then it’s just at 23 weeks your statistics are a little bit worse and it’s more like, you know, somewhere between a third and a half survive and the degree of disability is a little bit more. So, your likelihood of having a child born at 23 weeks with no disability is lower than at 24 weeks.
Dr. Fox: And you said that sort of once you get to 25, 26 weeks, it’s a lot different. So, what’s it like at 26 weeks for example, just so we can get a sense of how quickly that changes over that two to three weeks?
Dr. Stroustrup: So, even by 25 weeks, you’re looking at 70% to 80% survival. And again, your definition of what is the disability, the degree of severe disability. So, children who will never walk, who will never talk, who do not have the cognitive ability to sort of participate in a typical schooling situation, you know, that percentage is much, much smaller. So, it’s a combination of survival and, you know, degree of disability, like what percentage of those kids are gonna be in a normal classroom type of thing is much, much higher.
So, that’s where sort of the ethical conversations come in, is what is…if you have survival statistics where 80% of the children are gonna survive and 50% to 75% of those are gonna have mild or moderate, but sort of live a normal life kind of disability, then most people feel like those should be resuscitated and those should get intensive care and particularly because a lot of those babies will come out if they’ve had steroids and moms had the opportunity to have all those prenatal interventions that really help, that baby’s gonna come out screaming. So it’s a combination of the fact that there isn’t really anything, we talk about withdrawal of care or withholding of intensive care. You know, there’s nothing to withhold or withdraw at that point. The baby’s crying. So, I think it’s a combination of those two things, how the baby looks so early on and the fact that the long-term outcomes are really, really good.
Dr. Fox: Right. And the amazing thing is, I mean you’re talking about such a difference in prognosis over literally 10 days, you know, a week, one to two weeks. What is it that happens inside to the fetus during that one to two weeks that flips it from like, your baby’s not gonna survive to like, your baby’s gonna survive?
Dr. Stroustrup: Yeah, so it’s a few things but I think primarily and fundamentally it’s pulmonary development, it’s the lungs. So, the lungs develop, I sort of think about it sort of visually like an upside-down tree. So, you get the trunk and the branches and then kind of the leafy areas at the end, which are your gas exchange areas, they’re called alveoli, they sort of start to develop 23, 24 and then by 25 weeks they’re kind of there. So, you know, what you’re really looking at is the baby’s ability to take in air, and that doesn’t exist in any sort of immature fashion before 25 weeks. It’s still pretty immature at 25 weeks and a lot of children born at 25 weeks still end up having long-term chronic lung disease from trying to make these very immature lungs do a job they weren’t necessarily ready for super early, but it’s a lot easier for us to, you know, manage with our equipment, babies born at 25 weeks than a baby born at 23 weeks just because the lungs are more mature.
Dr. Fox: So, for a baby that is sort of born in this timeframe and, you know, does sort of make it through the resuscitation and is in the NICU, how do you counsel families about what to expect over the course of the NICU stay? Meaning either the conversation you have right after the baby’s admitted to the NICU, you know, sort of on day one or two, or the day before when you sort of know the baby’s coming out the next day. Because obviously, you’re trying to sort of set them up, what are the next several months gonna be like. So, how do you do that?
Dr. Stroustrup: Yeah, I mean, I think that we have gotten better over the years of involving families in the care in the NICU because there’s like several different parts of it that are very difficult. One is it’s just long. I mean the babies are in the NICU until their due date or beyond, and, you know, for many of these babies that’s months and months, you know, four months, five months, six months. And so for a family just to wrap their head around the fact that there’s gonna be… You know, this baby is not going to be home and available. They’re gonna have to come visit the baby in the hospital for that period of time, you know, most working mothers go back to work. Mothers who are home, they got their other children, they have to figure out childcare, there’s a lot of logistical challenges, just the feeling, for the parents to feel like they can parent a child who’s in the hospital for that long.
And then there’s the lack of control, is that you’re, you know, expecting to take home this baby and be the parent and now you’re in this situation where the parents are fish out of water. You know, it’s not a normal nursery environment, it’s an ICU and although we tend to be open 24/7, we really want the parents to come and visit. We invite the parents to participate in medical decision-making and, you know, join us every day when we talk about their baby with the whole medical team. You know, it’s a hard thing for families to feel sort of empowered and involved in that situation. And so that makes for a very difficult sort of early parenting period. Oftentimes moms are trying to pump breast milk because the baby’s not ready to nurse. That’s not fun, a lot of work and not easy and exhausting.
So, there’s a lot of that, a lot of emotional ups and downs which go with those just surely logistical challenges even if everything medically is going great. And so we talk a little bit about that and it’s very much a marathon and not a sprint. And encouraging families to sort of ask lots of questions because we really want them to be involved and engaged and educated. And there’s a lot of terminology that’s different. There’s a lot of sort of, you know, it’s really developmental biology. You know, we joke with parents when they’ve been in the NICU for a long time that they should get a certification in developmental biology in the NICU because there’s a lot of learning that has to go on just to be able to participate sort of meaningfully in the conversations about the baby. And so those things are difficult, you know, there’s lots of testing that goes on. I would reassure parents that, you know, we do lots and lots and lots of blood testing and imaging and all of these things, and a lot of them we do for everybody who comes at this gestational age because there are risks and we don’t wanna miss anything but that we will certainly let them know if there is sort of a meaningful finding that they need to talk about, and they should absolutely ask their questions.
And these days parents have access to the medical records and they can look at the child’s labs, and they can look at the imaging. And a lot of that is without context, really can be very alarming. And so I think it’s hard to find that balance where you make sure that everybody is, you know, aware of the things that are important but not overwhelmed by the volume of information that’s really available.
Because there are some things that I glance at and don’t think twice about because it doesn’t worry me at all. And then find out later that a parent has reviewed those same labs and was very, very worried because the lab had marked something as out of range because it’s out of range for an adult but for their, you know, very tiny baby, it’s actually totally normal.
And so, you know, I hate it when parents are like, “I’m so worried about this” or “I lost sleep about this last night” and it’s, like, something that didn’t even, like, crossed my mind to be worried about because it’s not an applicable worry for their baby. So, I think we talk a little bit about that, and then sort of reinforce that on a daily basis after the baby is born. And then we talk about parents about what they can do. Because, you know, they can pump breast milk and that’s really a wonderful thing for babies, for moms who are able to do that. They can touch their baby, they can hold their babies skin to skin and there’s tons of evidence to show that even for pretty sick babies, you know, if they are physically able to come out of the incubator and be held by the mom, it’s good for mom, it’s good for baby, everybody does better after that.
So, they can read to their behavior, they can work with any other children at home, we have child-life specialists who help families and other children understand what’s going on with this baby because that’s another stress. It’s the extended family, whether that be other children or adult relatives often wanna know what’s going on, and that can be an added stress on the parents at home. So, talking about all of this, you know, oftentimes it comes out piecemeal over the course of the first, you know, couple weeks of the hospitalization because it’s a lot to think about all at once. But there’s a lot of things we do to try to make sure that families are taken care of, not just the baby.
Dr. Fox: Yeah. I was gonna ask you, like, you mentioned child-life specialists, but what other resources do you guys or, you know, most NICUs have for families who are going through this prolonged stay there?
Dr. Stroustrup: Yeah, I mean it’s pretty standard to have… We have universally social work screening, for example for every family in the NICU. So, we have a social worker assigned to every family to help with whatever needs to be helped, whether that’s part doing transportation, strategies for dealing with the disruption to general family life with the baby being in the hospital, insurance issues, whatever it is. Our social workers are there. We have case managers who also do a lot of that kind of insurance and particularly getting ready for discharge if the child needs to go home with any equipment or special formula or anything like that, they can help with that.
Child-life specialists are great for the babies, but they’re also great for families in general, working with other siblings, working with the parents to create memory books and other sort of activities that sort of normalize the having a baby. You know, when people have very preterm babies, you don’t think about the fact that you miss out on that like normal birth process where it’s usually a big celebration and, you know, you get to do all of these picture-takings and congratulations, and so we try to do a bit of that with our families as well because there still is something to celebrate even if baby came really early.
So, all of those things are present. The medical team, you know, there’s family meetings that happen to make sure again, that everybody’s on the same page and that things are falling the way that, you know, everybody hopes for as much as possible. Some hospitals have facilities for families to stay in the NICU, some don’t. That’s more rare in New York City where we are, just for geographic space constraint problems. But some places in the country that’s possible.
There’s typically, you know, parent support groups that have the opportunity for parents to talk to either other parents or children in the NICU right now or parents who have had children in the NICU who are now home to kind of help figure out better ways to cope and get some support that way. So, there’s typically, you know, there’s psychologists for those who need them, there’s a lot of resources. I think it’s really, again, helpful to keep all those lines of communication open because if a family has a need that’s not being met, usually there is a way to meet it but the team needs to know. And so, you know, we always really encourage our families to kinda let us know how things are going for them because if there’s something that we can help with, we absolutely want to.
Dr. Fox: And I was gonna ask you sort of in the same lines, you know, over the past, you know, 20 years doing this, so to speak, in what ways have we really gotten better?
Dr. Stroustrup: Do you mean in terms of outcomes or do you mean in terms of services and taking care of the families?
Dr. Fox: Both. Meaning, you know, compared to 20 years ago, how are we now compared to then? And it could be we’re better in one and not the other or, you know, better at both, I have no idea.
Dr. Stroustrup: Well, I think we’re better overall. I mean the survival statistics do continue to get better. There was sort of major advances between sort of 1980 and 2000. We really moved the needle on what the limit of viability was, where people were talking about kind of 27, 28 weeks in the late ’70s, early ’80s. And, you know, we’ve been talking about 23, 24 weeks now for a while. We’re a little bit stuck at that point, and I think that that really is because we hit pulmonary development problems, you know, in terms of making as significant strides in terms of survival.
And there’s been over the past sort of 30, 40 years major advances in our ability to take care of small babies. We have surfactant, which is a natural substance that’s made by the body, but we can now give it as a medicine. It allows much better air exchange so it allows the lungs to work a lot more easily in babies who are born premature because they haven’t really made it yet. Whereas they would make this substance closer to term, and so we’re able to give that now, that makes a huge difference.
They have much better IV nutrition. Our mechanical ventilators are now appropriately sized for our small babies, you know, and able to give kind of much more gentle ventilation so we create a lot less lung damage. So those sorts of things have improved both survival but also decreased disabilities pretty significantly. There’s a lot more attention paid to non-invasive ventilation, so we end up with less lung disease. And lung disease is pretty tightly linked to neurodevelopmental outcome. We focus a lot more on neurodevelopmental care now than we used to and a lot more on nutrition. We have a huge focus on breastfeeding. I didn’t mention earlier, there’s lactation consultants available for moms both in the hospital and out in the community who are really helpful because there’s a much better understanding now that breast milk is really the best milk as possible.
We have donor milk banks for moms who can’t make enough breast milk. We can get donated human milk for those babies where it’s really needed and really makes a difference in outcomes. And that has been shown to be really, really beneficial. So, you know, we’re better at a lot of those medical things. I think on the family side, we are also a lot better at understanding the importance of building that family bond because, you know, the family’s ultimately gonna take this child home and they need to understand the child’s needs both from, like, a medical perspective, but also just, like, getting used to any new babies.
Although I’m a neonatologist, I started out as a general pediatrician and you talk about mom’s taking home new babies and moms are like, “When am I gonna know my baby’s hungry versus tired?” I’m like “You’re gonna learn the cry. Like, they’re different. For every baby, they’re different.” And now all that has to happen too. And having that happen in the sort of weird environment of the NICU is a challenge. But I think we’re much better at inviting families to participate. You know, when I started out in neonatology, the unit was closed to parents for large chunks of the day. They weren’t allowed to participate in our medical rounds. Now we encourage people to participate in our medical rounds, we’re open virtually all day long and I think that those things that allow the parents much more access and much more involvement in the care of the baby, which is long-term better for everybody.
We’re not quite there yet, but we’re definitely moving in the right direction.
Dr. Fox: What do you see as the next big advances in the upcoming, you know, 10, 20, 30 years would you say?
Dr. Stroustrup: I think continuation on the theme of getting parents heavily involved, you know, teaching parents how to take care of their baby before they leave the NICU, I think is really important. And I think we have a little bit of work to do there. I think providing better services for families after they’re discharged. You know, most NICUs have long-term follow-up programs, where they’ll do some, you know, either nutritional screening or more commonly neurodevelopmental screening over the course of the child’s first couple years of life. But those are sort of intermittent clinics where it’s like a once every six months, once every year. And I think families with children who have sort of needed such high level of care for so long early in life, really need extra support.
I think taking care of families in terms of mental health concerns, you know, there’s a great risk of increased risk of maternal depression, PTSD from a NICU stay, it’s, you know, not a normal thing to have to go through. And making sure that we support both parents in that transition to home and kind of the first few years of life I think is really important. There’s a little bit of work to do there.
Dr. Fox: Amazing. Wow. Annemarie, thank you so much for coming on the podcast to talk about this really important topic and I always enjoy hearing your perspective on it.
Dr. Stroustrup: No. Well, thank you for inviting me. It was great to talk.
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