Rachel:
Hi everybody, and welcome to today's Instagram live. We're really excited today. We are going to be having Dr. Mary Lauren Neel, from Nationwide Children's Hospital as our guest speaker today. She's a neonatologist and we're really lucky to have the relationship that we have with Nationwide Children's Hospital. Who is not only the lead site in our early detection network, but one of the lead hospitals in the country. Particularly looking at infant developmental care, and research in that area. So, I am just now going to invite Mary Lauren to join us, and here we go. I'm hoping that works. Welcome everybody. Hi.
Dr. Mary Lauren Neel:
Hi.
Rachel:
Thank you so much for joining us today.
Dr. Mary Lauren Neel:
Thanks for having me.
Rachel:
Of course, of course. We're really excited. I'm really excited to talk about this topic today, because I think it's a big one for a lot of our parents out there. Life and transition after the NICU. Before we get started, do you just want to do a quick introduction of yourself, and who you are and what you do?
Dr. Mary Lauren Neel:
Sure. Hey everybody. Thanks for being here. I'm really honored to be with you guys. So, as Rachel mentioned, I'm a neonatologist. I work in the NICU, and then I also follow these babies in our early development clinic. So, I follow these kids until they're three. I have a really fun opportunity to see them when they're tiny and very small, and then as they get bigger, and to get to work with their families longer. I also do research, and my research centers on basically how parents actually make a huge difference in terms of how our babies do. My goal is that, I think NICU parents and babies are amazing, and I really want to help parents help their babies reach their amazing potential.
Rachel:
I think, when we're looking at our families who have come through the journey of being in the NICU, everyone is so different. Some babies are now being born at such young ages, and we do know that they have high risk of developing things like cerebral palsy. But can you just describe a little bit what your typical day would be like in the NICU?
Dr. Mary Lauren Neel:
Yeah. So, I think typically the mornings start with rounds. So, if a parent is there, we would come by, the team would talk in a bunch of medical gibberish and then ideally we would translate into English, about what we're talking about. About the plan for the day, how the baby's doing, what are the baby's next steps, in terms of getting the baby home, because the goal is to get the baby home with the family, because we know that's where they're going to do best. Then the rest of the day is mostly just caring for the baby. Usually the babies are on an every three hour schedule, where every three hours they eat, they get their diaper changed, they get repositioned, those types of things. Then obviously just whatever comes up throughout the day we deal with.
Rachel:
Because I think it brings a good question now going, all right. A lot of people are used to that routine in the NICU, you've just said there's usually three hour rounds and there's all the different medical things that might be happening as well, which depending on each baby can be very complicated. Or at times, if they are at that point in transitioning, it may just be that they're getting monitored to make sure that they are ready to go home. But what are some of the best ways for a family to create a safe environment at home, and how to transition? It's such a difficult time for a lot of families, but also exciting. They're finally getting to take their baby home after all these months.
Dr. Mary Lauren Neel:
Yes. I mean, I think that the transition to home is exactly what you said. It's what we have all been wanting, and it's what the family more than anyone has been wanting for the baby's whole life. So, it's a really exciting time, but it's also a very scary time. I think acknowledging that this is a big transition and it might feel scary and it might feel overwhelming, I think is really important, that that's not an unusual feeling. That's how most of our families feel. But also I just want to say, you can do it. You are the most important person in your baby's life.
Dr. Mary Lauren Neel:
Yes, there's going to be a transition, and yes, there's probably going to be some rough days and rough moments, but your baby is better off at home with you. I think trusting the process. So, the NICU is not going to send home the baby until the baby's ready to go home. I think the baby has to meet certain criterias. They have to maintain their temperature. They have to not have spells for a certain number of days. They have to eat, they have to gain weight, they have to do all these things. So, I think really trusting the process and trusting that your baby's ready to go home with you.
Rachel:
We are getting some questions in, so I want to make sure that as we go through this, that we are answering people's questions, because it is, what are the top needs, ways to help a family as they transition from the home? Because we do have obviously providers that are listening as well. What's your top five that you would think about when you're communicating that moment when someones going home?
Dr. Mary Lauren Neel:
Yeah. So, I think the more, especially as the baby does get closer to home, I think the more the family is able to be there and do more and more of the cares, and take over more of the care of the baby, I think that gives people more confidence that they know how to do this.
Rachel:
Yep.
Dr. Mary Lauren Neel:
I think all of the trainings that the family gets, the discharge teaching, the car seat teaching, the CPR training, I think just all of those things instill confidence that you're ready. I think identifying before you go home, identifying this may be hard and who are my go-to people? How am I going to support myself, as we transition? Who am I going to call when I'm having a rough moment? These types of things. I think that's really important too.
Rachel:
I think that's a great advice, actually knowing, oh right. Who is my support network that you have met in the hospital? But otherwise, who is around you, who's your family, who's your friends? Maybe it's even a neighbor.
Dr. Mary Lauren Neel:
Yes.
Rachel:
We've just got another question that we do need to answer, because I want to make sure that everyone understands even what we're talking about. So, what does neonatal mean? In England you have the ICU, not a NICU. So, let's describe that so everyone knows who we're talking about.
Dr. Mary Lauren Neel:
Yes. Thank you. I'm doing the medical thing where we speak in language that makes no sense. So, the neonatal ICU is a place for babies that need ICU level care. So, typically, half our babies are usually preterm to varying degrees, and then half are full term kids that have some issue as well. So, it's basically a baby intensive care unit.
Rachel:
They go straight to that intensive care unit from the delivery room pretty much?
Dr. Mary Lauren Neel:
Correct.
Rachel:
Is that correct?
Dr. Mary Lauren Neel:
In those places, yes.
Rachel:
Yep. We've just got another question as well. So, does being on a vent... Well, let's talk about the NICU for a little bit longer before we go to home. Because we've got so many wonderful things to talk about at home. But does being on a ventilator in the NICU lead to reduced lung capacity with CP concern? Oh, so somebody's... An adult can... Sorry. I'm trying to just read. Early adult with CP concerned about COVID-19. So, I suppose obviously we are hearing a lot right now about people being non ventilators due to COVID-19, obviously that is due to a virus and that's why they're on those ventilators. Babies are on ventilators in the NICU, but that's for a different reason. It's not for a virus. Can you just describe a little bit about what you see in that regards?
Dr. Mary Lauren Neel:
Sure. So, one of the biggest challenges we have when a baby's born early, is that their lungs are very immature. Obviously if you're born very, very early, your lungs are very, very immature. If you're born a little bit early, your lungs may not be that immature. So, if your lungs are very immature, often you need a ventilator to help you breathe until you get bigger and stronger, and are able to support your own breathing. So, obviously each case is different, in terms of how sick that baby's lungs are or not. Some kids only need a ventilator for a couple days. Others it's weeks, others it's months. So, I think the degree of lung disease very much depends on the individual baby.
Rachel:
What's a common lung disease, I suppose, that you would see in babies? Does that last forever, or is this something that is more of a short term piece?
Dr. Mary Lauren Neel:
Yeah. So, the most common thing we see is something called respiratory distress syndrome, or RDS for short. It's basically you hear about surfactant. So, surfactant is this amazing substance that your body makes and it helps keep your lungs nice and open. Unfortunately, babies don't have a lot of that when they're born, if they're early. So, sometimes we actually even put in a breathing tube and give them surfactant into their lungs to try and help their lungs stay nice and open. So, initially most babies that are born preterm do have some degree of respiratory distress syndrome. Some need breathing tubes and ventilators, others need something called CPAP, which is basically a machine that blows some pressure into the lungs and keeps the lungs nice and open. If the respiratory distress syndrome goes on for a longer time, a baby can develop something called BPD, or Bronco Pulmonary Dysplasia. So, that is something that is a longer term thing, but certainly there's varying degrees of how severe or not BPD is as well.
Rachel:
Yeah. No. I think these are things that obviously children who end up with a diagnosis of cerebral palsy or who are followed through higher risk infant follow up and things like that as well, can have these as well. Nothing is necessarily on its own. A child just doesn't have BPD and/or CP. They can have both, and there can be a lot of different complicating factors, different things. There's one more question around birth and in the NICU. I suppose it's something that we hear a lot about is, how do you know that your child's going to go into the NICU? What are the reasons for them doing that? You've said prematurity, someone's also just asked the question, do babies with low Apgar scores automatically go into the NICU? Everyone hears about Apgar scores, but maybe doesn't know what they mean and how they're used in the clinical care.
Dr. Mary Lauren Neel:
Yeah. So, Apgars are interesting. So, Apgars, let me start with Apgars in pre-term babies. So, Apgar was really designed for term babies. So, we do give pre-term babies Apgar scores, mostly just to give us a sense of how well... The Apgar score talks about how well the baby transitions from life in the mom, to life outside the mom. So, the Apgar score, even in a pre-term baby, gives us some idea of how well that baby transitioned. But it's not really designed for pre-term babies.
Rachel:
Sure.
Dr. Mary Lauren Neel:
Now, Apgars in full-term babies, and I did mention that about a significant number of the babies in the NICU are full term babies, it depends on what's going on. So, in cases of very low Apgar scores, oftentimes it's because the baby didn't get enough oxygen at some point before birth or during delivery. Sometimes if the baby scores stay very, very low, they would also have other things. In most cases, those babies need respiratory support and other things, and they often would come to the NICU, so that we can evaluate them, because we worry that they didn't get enough oxygen at birth.
Rachel:
Yeah. No. I think they're really good questions that everyone's sending in. So, please keep asking us questions on what you want to do. But I do want to transition to home, because as you said, this moment of finally being able to take your baby home, it's such a monumental occasion. It's scary. It's like, oh my gosh, can I do this? As you said, parents can do this. You are the center of your child's little universe and such a wonderful moment for everybody. But what are some of the other things that you will give advice for, about taking your baby home?
Dr. Mary Lauren Neel:
Yeah. So, I think that, and I said this already, but just to emphasize the point, I think acknowledging within yourself all the conflicting feelings that go with it. You're so thrilled, but you're also a little bit terrified. I think some people are probably more on the thrilled end and some people are more on the terrified end and some people are somewhere in the middle. I think just acknowledging that and recognizing that that's normal and that's expected, and this is a big transition. I think one thing that's really important is... So, the sensory system is one of the first to develop. The sensory system, it influences downstream development because it's such an early system to develop. So, one thing I think that parents can do when you go home, is really do things to provide supportive sensory experiences for your baby. Things like that, if you think about the sensory system, you're thinking about things like vision. So, depending on the age of your baby, your baby loves your face. So, talk to your baby close enough that they can see you. They want to see your face. They want to-
Rachel:
That's a good point. Babies can't see far away.
Dr. Mary Lauren Neel:
Correct.
Rachel:
So, you need to come in close for them to actually even be able to recognize features.
Dr. Mary Lauren Neel:
Right. Go slow. They can't track very fast. I mean, again, depending on the age. But I think, let them see your face. For hearing, auditory sensory, sing to them. I have a lot of music therapists I work with and they've been teaching me a lot about this, but singing songs with simple melodies, like Twinkle, Twinkle, Little Star, and these types of things. Vestibular, so do skin to skin when you get home. Hopefully you've been doing that in the NICU, but keep doing kangaroo care, skin to skin at home. That's great for the baby. It's great for you.
Rachel:
That creates such a wonderful mother/baby bonding experience as well.
Dr. Mary Lauren Neel:
Yes.
Rachel:
It's such a special time and hopefully it's that moment where you all both get to have this moment of taking a breath.
Dr. Mary Lauren Neel:
Yes.
Rachel:
And going, oh wow. Yeah. I'm at home. I'm with my baby and just enjoying all that newborn cuddles.
Dr. Mary Lauren Neel:
Yes, exactly. Then oral, depending on different babies may have different ways that they eat or different sensory experiences that are supported, whether that's passy dips and milk. I mean, obviously your medical team can help you know what's safe for your baby. But these are all things that are really important to their development that you can do at home.
Rachel:
Yeah. No, I think that's wonderful to hear that all those things that almost come as a natural instinct to parents, and to those that are caring for babies, are actually doing wonderful things for their development. The other question that I wanted to ask you as well is, when we are thinking about development and developmental milestones, it's really hard in a way sometimes not to compare your baby to somebody else's baby and those different things. Do baby's born really premature or those that have come out of the NICU, have different developmental milestones that you would look at? Or different goals?
Dr. Mary Lauren Neel:
Yeah. It's a great question. So, in general, babies that are born early, you have to account for their prematurity in terms of their milestones. So, if a baby born full term tends to, whatever it is, social smile at eight weeks, you have to subtract the prematurity from that. So, your baby, by their birthday, might be six months. But by their prematurity... In the NICU you hear about corrected gestational age. So, you really do have to think about that. You don't compare your baby to... Well, probably not any baby. But in general, don't read based on their birthday, read based on their due date, because you have to account for that. We do expect them to do the same milestones, but we do account for their prematurity in terms of the timing.
Rachel:
I think that's so important, particularly with so many apps and different things that a lot of mothers start to use with milestones. It's like, oh my baby was born four months ago, but they're only doing something that's a milestone of a two month old. Well, that could actually be completely correct for your child, particularly if they're born two months early.
Dr. Mary Lauren Neel:
The other piece of it is that even in full term kids, kids do things in their own timing sometimes. All these developmental milestones are in a range. If you have more than one child, you know all of your kids do things at different ages. I think the other piece of it is that, at least in my clinic, what I try to tell my parents is that if your baby is making developmental progress, I'm happy. So, they can do things on their own timetable. That's perfectly fine. But I just want to see them continuing to make progress and move forward. I think that's the goal. Not that they would necessarily go in this certain order of milestones, but that they would continue to acquire milestones in whatever timing they do.
Rachel:
They do. I think that goes back to really trusting your instincts. That parents know best in a lot of different ways, you know your baby better than anybody else knows your baby. Every child is different and it doesn't mean that every parenting approach is going to work for everybody as well. So, one other question for you. So, I would love to hear about some of the research that you are actually doing, because it is really wonderful and it's some of the cutest research that you've ever seen. But tell us a little bit about some of the research that you're doing.
Dr. Mary Lauren Neel:
Yeah. So, I actually stumbled into this research, I guess. I never really planned on it. I started working in the NICU and I started being around babies and families in the NICU, and I was so amazed by some of the families. I knew, I couldn't prove it, but I knew that their babies were going to do well because they were so amazing. So, that got me thinking, and I have been really interested in babies born early are sometimes really sick. Sometimes they have a lot of complications, and we're obviously doing everything we can in the NICU to try and help that. But we're doing everything we can on that. But I think one thing that is more controllable than that is, how do we help parents help their babies at home? So, I've actually been doing a lot of work looking at what are the different things parents can do to support their child's development.
Dr. Mary Lauren Neel:
Because I think that's a huge untapped resource. It's been really fun and really exciting, and we're really finding that parents can make a really big difference in terms of their child's meeting of their potential.
Rachel:
Yeah. I think it's just so wonderful. It's taking it away from that really medical environment, which is the NICU and it has to be. These babies need to survive and there are so many complications that come with that. But that transition to home and going, do you know what? The care doesn't have to be centered around this medical world. There is such a wonderful moment where it starts getting centered around the family, and the parents.
Dr. Mary Lauren Neel:
Yep. Exactly. I mean, even though the NICU feels like forever, it's really quite a small part of that child's ultimate life. I think a lot of the NICU care really should center around, how do we obviously do the things we have to do to help the baby? But also how do we help the parents and the family, help the baby once they leave this place?
Rachel:
What sort of services are on offer for families in relation to that? Are there parent support groups that you would recommend people joining or is there programs that parents can do? What's the future going to look like for that?
Dr. Mary Lauren Neel:
It's a great question. It's something that I'm really thinking a lot about. I hope that as my career goes on, I'm going to have a better answer for that, that's one of my goals. There are support groups and I do think that having people in your life who have had a baby in the NICU, is really important because I think that there are challenges that go along with that, that parents who never had a baby in the NICU really cannot... They can't empathize with. So, I do think that there are support groups, and I think they're great. There's also, I mean, different NICU have different things. Our NICU has parent navigators. So, it's parents who actually have babies in our NICU that now we employ to come talk to families.
Rachel:
Oh, that's amazing.
Dr. Mary Lauren Neel:
They are lovely. A lot of NICU's do parent pizza nights or support groups, while the baby's in the NICU. So, I think there definitely are those. I do think having those people who get it is really important. There are also, I mean, there's a number of different places have different programs for parents, that's very individual, depending on the place. There's also a number of really good positive parenting programs that are really widely disseminated. But I think some of the resources are more or less available, depending on where you are, but there's a lot out there. Some of it depends on what you need and what you and your child need and what works for you.
Rachel:
I think that's just such an important thing to make sure that you look at those resources, because they are out there and they are available. So, ask. Sometimes it feels hard to ask. We get a lot of comments around PTSD after the NICU. So, I think it's so wonderful that you said, connect with somebody else who has had that experience, because really no other person will understand what that's like. When it comes to PTSD, we are actually going to a completely Instagram live about PTSD, because not only does it happen obviously around really monumental occasions like childbirth, and obviously babies going into the NICU, but it's also happening to a lot of people right now with this uncertainty that we've got in the world.
Rachel:
I think there's going to be some ramifications of that. So, we are, just so everyone knows, we are actually going to do another Instagram live, particularly focused on that issue. But I think all of these sorts of things are good advice for people to reach out and make sure that they get help. So, if you could do one key takeaway as we finish up today, what would yours be?
Dr. Mary Lauren Neel:
That's tough. I want all the parents, and the providers actually on this call, to know that you are the most important person in your baby's life, and you can make a difference in your baby's life. Just because we haven't touched on this, you also need to support yourself in order to be in a good place so that you can help your baby.
Rachel:
Yeah. I think that's such incredible advice. I know a lot of the parents on here, we are here to support you, so please, if you have any further questions, reach out to us. We will send them Mary Lauren's way to help get them to answer them for you. But just wanted to say a big, thank you for joining us on this Friday afternoon. I hope everyone has a wonderful weekend, and we will be back with Instagram live on Tuesday. We have a really special guest, with ESPN sports announcer, Jason Benetti. So, for everyone, please make sure you join us because it's going to be a lot of fun.
Dr. Mary Lauren Neel:
Thanks everybody.
Rachel:
Bye. Thank you.