The Incubator
🟠 CHNC 2023 COVERAGE - Talking about CDH and ECMO Robert DiGeronimo and Sarah Keane 🏥
Join us as we welcome Robert DiGeronimo and Sarah Keane, who share their enriching experiences as co-chairs of the CDH focus group and members of the ECMO focus group within the Children's Hospital Neonatal Consortium (CHNC). Gain insights into how the CHNC has blossomed into a network of knowledge sharing and cooperation across the country, leading to the expansion of focus groups that provide hope for those with rare diagnoses often overlooked in individual research studies.
As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.
Enjoy!
Join us as we welcome Robert DiGeronimo and Sarah Keane, who share their enriching experiences as co-chairs of the CDH focus group and members of the ECMO focus group within the Children's Hospital Neonatal Consortium (CHNC). Gain insights into how the CHNC has blossomed into a network of knowledge sharing and cooperation across the country, leading to the expansion of focus groups that provide hope for those with rare diagnoses often overlooked in individual research studies.
As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.
Enjoy!
Hello everybody, welcome back to the podcast. We are joined this morning by Robert DeGeronimo and Sarah Keane. Bob, Sarah, thank you for coming on the podcast. Let's put Sarah's microphone close to her face and you have to be uncomfortably close to the microphones to minimize the background noise. But can you maybe introduce yourselves in terms of where you're from and what kind of role do you play within the CHNC or it's one of its focus groups?
Speaker 2:Okay, sure, sure, sure. So yeah, I'm Sarah Keane. I'm a neonatologist, like many of us, and I work at Emory Choa in Atlanta, and I guess my big roles is I'm one of the co-chairs of the CDH focus group with Teresa Grover who is, you know, one of the bright lights of CHNC. So I get to ride on her coattails and then I am an I don't know eager member of the ECMO focus group. I'm actually not one of the co-chairs, so that's Natalie.
Speaker 1:But it's not an automatic. It's not because you joined the CDH group that you're automatically enrolled in the ECMO. No, I like that too.
Speaker 2:I mean, if you don't like both, you're in real trouble. That's right there is quite a bit. So Natalie is actually the co-chair with Bob, but she's actually not here.
Speaker 4:Fine, fine, that's me and then I'm Bob DeGeronimo, I'm at University of Washington, seattle Children's Hospital, and I got involved with CHNC shortly after I got out of the military and I was in Salt Lake before I was in Seattle and they were a fairly early member of CHNC something like 2012 or so and then, yeah, just really enjoyed being part of CHNC and over time, you know, there seemed to be, you know, a space that was kind of missing for a lot of what we did with ECMO and Natalie at CHOP. We kind of got together, talked with Jackie and created the ECMO focus group, I think like five years ago or so, and then I've been pretty involved since then.
Speaker 1:And you're a neonatologist as well. I am a neonatologist. Thanks for reminding me.
Speaker 4:When you're at a conference, it's like you're on vacation.
Speaker 3:right, you have a different identity, but here, we have to make sure we ask. There's so many different specialties, yeah, yeah, of course we have lots of questions about the focus groups, but I wanted to take advantage of your involvement with CHNC, for you know now over a decade and maybe you can talk to us a little bit about how you've seen it grow. You know the the positives that it's brought to your practice.
Speaker 4:Yeah, I think it's been really exciting to see it grow from where it started.
Speaker 4:And you know, now with having I think it's like 46 sites and growing every year, but it, you know, I think when you're you're primarily based at a children's hospital, you get to, you know, just year after year, having that network of people that you can reach out to about difficult cases, or you know how do you do this or you know, have you experienced this?
Speaker 4:You know it was hard to really find that group and you know you always have kind of friends that you make along the way. But I think to me that's been the best thing. Over time and then also as the other focus groups have grown, you know, I think those networks of having people that you know at other centers and that you can reach out to and you can talk to once a month about you know how you're doing this and just that knowledge sharing to me is really the best thing about CHNC, where you know it's not like we're not going to tell you what we're doing and it's just super collaborative. And I, you know that's what I think I liked from the very beginning was just, you know people were very open and you know, you know wonderful about sharing how they did things and it just, I think, makes everybody better. I agree with that.
Speaker 3:Yeah, you know that's something we haven't touched about. We've spoken to many focus group members, but you guys are meeting, it seems like in every focus group at least once a month, some groups more often.
Speaker 4:Yeah, so we're once a month.
Speaker 2:Yeah, some of the I think CDH is twice a month. Yeah, usually A few cancellations here. We're all too tired after this week, but usually we're twice a month.
Speaker 3:Yeah, I mean, that's not an insignificant investment you know to bring to your units.
Speaker 2:Yeah, well, and Bob is famous for, I think, being in all the original self-enforced groups, or so, yeah, I had a, no, no, he's not.
Speaker 1:The Roger Federer of the CHNC.
Speaker 2:That was a running joke for a number of years, he's actually well known.
Speaker 3:Well, we're the original seven.
Speaker 4:Let's see, there was thanks for bringing that up CDH, NAC, the HIE group. There was a group that's called the PACE group now that's Palliative Care and Oriented but it was called the Mortality Group. I don't know if you heard that and then they decided that was bad name.
Speaker 1:Yeah so um.
Speaker 4:I think. And then the Gastroskiesis group yeah, I wasn't part of that, but one of my coworkers had children from that and the BPD, I think, oh, and BPD, yes, which you're also in.
Speaker 3:Yeah yeah we're involved with BPD. And that makes sense, right, because it really you really started to look at what are the things we get you know, referred in most about, but but still don't have enough numbers individually to study. And now it's grown extensively. I saw all those tables at the focus group here. Yeah, yeah.
Speaker 4:Yeah, well, I think it's kind of for those same reasons, you know where, again, for all those diagnoses that you know are you, you certainly have those patients at other hospitals, but you know you, you tend to get, you know that's your primary population at, you know these freestanding referral children's hospitals. And again, being able to, you know, have expertise and and a lot of patient volume in those areas, really, I think allows you to, you know, take better care of your patients when you reach out to other people, because, yeah, I mean, we're all better when we don't do it by yourself.
Speaker 1:Totally. Yeah, I think one of the aspects of the CHNC really shines in the CDH focus group because it is it is a pathology that we all see fairly rarely, thankfully, you rarely walk into a unit and there's like 12 babies with CDH, thankfully. But when, and despite the scarcity, despite the scarcity of the pathology, because of the collaborative efforts, the work that you guys have been able to put out includes a tremendous number of patients, which is always quite impressive. I think we were looking at some of the posters also this this time around Hundreds of patients with CDH which Before the era of collaboration, would have been impossible to even conceive to put that together in a synchronous fashion.
Speaker 2:Yeah, I think we're currently, I mean since 2010,. It's like 3,600 patients with. Cdh, which is, yeah, like a crazy number and, yeah, no one place has anything like that. So and it really lets us look, even within CDH, at like smaller groups that would be small at any one place. And we're doing a project now on CDH and congenital heart disease, sort of coexisting, and you know, usually you have four patients with that and it's hard to gather any.
Speaker 1:Yeah, when you're looking for two inclusion criteria the numbers.
Speaker 2:The numbers are both rare, so and so then the numbers on that look like, you know, there's going to be real numbers, that we can actually get some information so, so it's really great.
Speaker 1:What are some of the things that you guys have been able to look at that you're quite proud of in terms of how you've been able to move the needle forward and how we take care of these babies today, when it comes to CDH specifically?
Speaker 2:Yeah, I think one of the things that's really nice about it because CDH is, you know, like a popular disease, right? I mean, there's the CDH study group. It's not more than, say, gastroscopy, so some of the other things. There are people that are interested in it, but CDH has so much broad like data on nutrition, central lines, infections, things, that some of those other groups focus a lot on the cardiorespiratory, which is super important, but the other stuff is probably just as important and we have information on that that those groups just don't collect because, the CDH database has, or in the CHNC database has so much information.
Speaker 1:Yeah, I think there's so many aspects to the care of babies with CDH that we can think of whether it is pre-repair, whether it is post-repair, I think, how they do feeding-wise afterwards. I mean, there's so many aspects of it that could be investigated. I'm wondering right now at this meeting how? What kind of priorities are you guys setting for the future in terms of what needs to be investigated sooner rather than later?
Speaker 2:Yeah, you know everything. No, yeah, I don't know. I mean, I think nutrition is still a big focus for us. One area that I'm personally really interested in is is care for the babies after they're repaired, sort of as they're recuperating, especially ventilator and respiratory support management. I mean, every place now everyone has a protocol for delivery room care, the early days, but almost no one has a protocol or one with any data for after that. So that's another thing we're going to put our heads together and look at. And then, I think you know it becomes popular every 10 years or so. But, like hemodynamics and CDH, right, it's really complicated and you can really, you know, either do great or not. So that's the other thing we're kind of looking at right now.
Speaker 4:I think there are also the whole. You know where does ECMO play? You know what role does it play with CDH. You know it's pretty consistent in most databases that about a third of CDH babies will end up on ECMO. But it's a little controversial about how you use it, when you use it, when you repair on ECMO.
Speaker 4:So I know, as you know, we've had a lot of overlap between CDH and ECMO and I you know there's been a movement to. You know, maybe put these kids on sooner or repair them sooner, but is that really the right thing to do? I don't think we really know that, but I think that's opened a lot of collaboration and discussion about you know really what is the best approach. And the other thing that's really nice too is that you know that is one disease that the surgeons are pretty heavily involved. So I think within CHNC, what I like about the CDH group too is we have a lot of pediatric surgery people that participate and when you go to the different you know CDH meetings, you know CHNC, I think, has had more of a presence moving forward. Yeah, I was going to ask you. The CDH international meeting is in Lil, france, I think so a very big cardiac city yeah.
Speaker 4:But that you know, I think there will be a pretty good representation from CHNC there and and and you know again, not just you know in our country, but it is one of those diagnoses, I think, that you know crosses Is that something you guys are thinking about looking beyond the US and trying to establish ties with other groups that are working on CDH around the globe.
Speaker 4:Yeah, no, that for sure. And that's the same with ECMO too. You know, I think there's Euro, elso, and they Europeans, a lot of them come to to the meetings in the States, and not not just, but, you know, also like South America the parts of the world Asia and and I think you know we're seeing that more with CDH, where people are are trying to work together.
Speaker 3:Yeah, Can you tell us also a little bit more obviously, you guys have a lot of crosstalk with some of the other pathologies and other things you guys are looking for in the ECMO group specifically.
Speaker 4:Yeah, I think because ECMO, if you do 10 cases a year, that's probably high volume for a neonatal center.
Speaker 2:Even though it doesn't sound like it.
Speaker 4:You know recently.
Speaker 1:It sounds terrifying 10 ECMO cases a year.
Speaker 4:And you really have to be part of a larger ECMO program in your hospital where you just can't do it as neonatalgy anymore. You have to collaborate with your PICU friends, as painful as that can be sometimes, but they're actually pretty nice.
Speaker 2:Or the CI, yeah, the CI, yeah, that's kind of a step up, yeah, Just kidding, but it is also one of those things that I think.
Speaker 3:So much room for improvement. Right Communication at their coffee.
Speaker 4:But within your children's hospital it's nice because I think you get to know those people and you share a lot of resources. But recently there's been a lot of issues with equipment and supply shortages. I know we've seen that with medications, but in ECMO, specifically the circuits and the different oxygenators, there's been a lot of shortage or manufacturers have kind of stopped making systems and a lot of the stuff. With so much adult ECMO now they just don't design things that are specific for neonates.
Speaker 4:So I think for us, a lot of the new equipment or technology that comes out trying to sort through what actually works for neonates and is it safe to use in neonates has become really, really important and Sarah has done a tremendous amount of work with doing VV ECMO versus VA ECMO and they're clearly a leader in that at Emory. But for three or four years we had the VV cannulus that fit neonates were off the market. So I think a lot of centers that did neonatal ECMO kind of forgot how to do VV ECMO. And that's actually one of the workshops we did here and we actually did it last year and was really popular Was teaching neonatology how to do VV ECMO, because the new cannula came on the market and has been out and that's been a great collaboration.
Speaker 4:Brian Gray, who's a surgeon in Indiana. We've been pulling our cases together and we're planning to publish that. But I think we learned there are some definite kind of little nuances of how you use it, but to me that was a great example. When that came back on the market we kind of all talked to each other and, oh, this didn't go well but this went great and yeah, so that's been really important work that we've done recently.
Speaker 3:Yeah, and the workshops are so valuable Because even if you're saying 10 a year, if you don't have a dedicated team and some units don't, so everybody cycles through you may only get C1 or 2 on your service time. So I think, even for those of you who are seeing a quote, unquote, lot of it, that it's so valuable to have those hands-on opportunities.
Speaker 4:And a lot of.
Speaker 4:There's been kind of creep with neonatal ECMO 2 where hospitals they've kind of just put those kids in the PICU and it's not that they don't know how to take care of ECMO patients, but it's you know they don't.
Speaker 4:You know it's a different population and all the stuff that goes into caring for a CDH or a neonate. You know, those sorts of things you know can get missed depending on what sort of collaboration you have within your units. But there's been a real movement, I think, within the children's hospitals to bring ECMO back into the NICU primarily. And I think we've at CHNC have really played an important role with helping centers, you know, using our experience to say you know, this is how you bring it back in, this is the training you should do. You know and that was part of what we were talking about at our workshop was, you know, doing neonatal specific simulation to? You know, kind of reteach us so we can safely do it. You know, because I do think and I think we kind of as neonatologists believe those babies, you know, are better cared for in the NICU if you can do that at your center.
Speaker 2:Yeah, yeah, I think the HIE patient on ECMO is the other group you know it's.
Speaker 2:I mean we've been doing that and continuing cooling now in most of the NICUs for I don't know five or ten years and really we've had pretty good outcomes, like a lot of some kids actually normal at follow up you know and it, but when you see those babies cared for in the PICU, there's, you know, not the knowledge we have about how good especially the moderate HIE patients can do in terms of outcomes, and so they have a lot of doubts about even offering about candidacy, which we had 15 years ago.
Speaker 2:I mean to be clear, and so I think that's one at URO. Else, anyway, that most of the questions I got from PICU doctors were PICU doctors taking care of NICU patients and uncomfortable about HIE and that's actually a huge group right now and like cooling and managing all of that kind of stuff. You know that I don't know that's easy to do wrong too.
Speaker 4:So yeah, and that's. We actually did publish a paper from our experience showing that that's one of the areas where VV is better than VA and you have less brain injury, and you know. So I think that was an important message. You know, if you're putting these kids on, if you can do VV, that's better.
Speaker 1:One of the things that you guys brought up at this year's symposium is potentially looking at how can we incorporate precision medicine in CDH, and thinking about maybe how we can start triaging patients based on risk severity, and trying to think about calculators. Can you talk a little bit about what that project may look like, because I think it's something that we would not even have considered in the past to actually be able to triage patients with such a rare condition. But now, thanks to the, to the large data set that you guys have in the years of experience, you're actually able to maybe classify patients with CDH based on risk factors, which is kind of impressive, yeah yeah, I mean, I think we have some of the information, but we don't have everything.
Speaker 2:I mean the thing you learn, even as you look at these big groups, is that you know you get OE, lhr, you get these different numbers and those just don't tell the whole story right.
Speaker 2:You know you get information on the cardiac status, those kind of things, but you're you're missing part of it. So I do and, yeah, I don't I don't really know where that's going to go, but I think we have like 60% of the data on who's going to do well, but we're missing this big chunk. That is, yeah, genetic or something you know that we need to figure out, and it CDH, like isolated CDH often haven't historically gotten like genetic testing or any of that kind of stuff.
Speaker 2:But you know, it's a big anomaly and I think we'll start to do more of that. And then you know, maybe, maybe, figure some stuff out.
Speaker 1:For me, being on the outside, it does feel like the the goal is in reach, though I feel like maybe not today, but in a few. I feel like in the few years we'll be able to get there, is it? Is that miss, miss?
Speaker 2:I think we're going to make progress.
Speaker 4:That's good.
Speaker 1:And then make progress, and then in 20 years we'll be like I can't believe we did that, but even even the things you're talking about right now LHR and stuff, things that we've used as dogma for how do we think about these patients. We're rethinking already, which is a huge step in the process of establishing a new way of thinking for these patients.
Speaker 2:Yeah, yeah, I mean in the pulmonary, you know vessel remodeling, right? I mean it's so complicated and it's not anything like anyone else and it never. It doesn't fit with severity like it should you know. So, that, like I think that would be huge. Like which? Which medicine, you know? We're basically just putting sequential pulmonary hypertension meds on to see which one works, hoping one does, and it would like to have an idea what was going on in a particular patient and which one is most likely to work.
Speaker 2:I mean right, that would be incredibly helpful. So, because sometimes we end up on four and we're still not any better, Right. We feel better, at least that we try, okay, but I think also the you know, to your point, ben, like identifying.
Speaker 4:You know who are those really sick patients. You know, and the whole fetotherapy. You know we have a fetal therapy group at CHNC but you know how that fits in, you know and what is the benefit you know, and trying to have those markers to identify. You know the sicker patients that really should deliver at a children's hospital but it's also allowed, I know, at our center having, you know, pretty like really low risk CDH patients. You know, if you have a big catchment area, you know having a family travel from Alaska or Montana to Seattle is a long distance. And if you can't identify, you know patients that are low risk, that are going to do well and they have pediatric surgeons. You know I think it can allow those families to stay home and minimize the trauma on the family.
Speaker 4:Yeah, I think that's the other end of you know what's low risk that we can safely maybe take care of in the community.
Speaker 3:I love that. Well, Bob, Sarah, thank you for joining us today. We've learned a lot and we're looking forward to seeing more articles coming out from your groups.
Speaker 4:Yeah, Thanks for having us.
Speaker 3:Thank you very much.