#310 – 🗞️ NeoNews - Operation Stork Speed, Parents and Social Media, and more…
- Mickael Guigui
- May 18
- 32 min read
Updated: May 25
Hello friends👋
In this week’s episode of NeoNews, the team reflects on a quiet Mother’s Day before diving into a full slate of stories touching the emotional and political corners of neonatal care. First up: parenting in the digital age. The crew unpacks a gripping New York Times essay by Amanda Hess, whose prenatal diagnosis of Beckwith-Wiedemann syndrome led her down the rabbit hole of medical Googling, Facebook support groups, and the complicated power of online communities for medically complex families.
Then, we turn to formula safety and the Biden administration’s new “Operation Stork Speed.” The team discusses the implications for NICU care, parental anxiety, and advocacy in the wake of increased scrutiny over heavy metals and contaminants in infant formula. From there, we navigate the ripple effects of tariffs on medical supplies, pharmacy deserts, and drug shortages—all of which directly impact the NICU.
Rounding out the show: U.S. birth rates now favor parents over 40 versus teens, RSV vaccines show impressive real-world results, and new research questions everything we thought we knew about preemie blood pressures.
Packed with insight, outrage, and a few Dumbo references, this episode covers the headlines shaping neonatal care and the families we serve.
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The articles covered on today’s episode of the podcast can be found here 👇
Operation Stork Speed
INFANTS Act
Having a child in a digital age
Hospital goods
Shortages
Pharmacy costs→deserts
AMA > teen moms
MMWR: RSV iz x outcomes
BPs in PTI
J Perinat: Sleep x wellness:
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The transcript of today's episode can be found below 👇
Eli:Hello everybody and welcome back to Neo News. It’s Tuesday, May 13th, and it was Mother’s Day this past weekend. Ben, Daphna, how was Mother’s Day? Did you guys do anything?
Ben:I had a great Mother’s Day. It was fine. We went out. My wife got some flowers and lunch. Great Mother’s Day. How about you?
Daphna:Just a laid-back Mother’s Day. Dinner, a show, hanging out in the pool. Very South Florida Mother’s Day.
Eli:Mine was a very New York Mother’s Day. My twin brother took the opportunity to interpret this as Mother Feedback Day. So it was like Feedback Friday for my mom, and all know how uplifting Feedback Fridays are.
Daphna:Brave, brave, brave dude.
Eli:Very brave, because we were in a car that he could have been evicted from at any moment. Anyway, lots of stuff going on in the news. I must say the bit of news that I’m watching is there’s a matcha shortage. Did you guys know about this? There’s a shortage of matcha coming out of Japan. No more green desserts.
Daphna:I want to like matcha, I just can't.
Eli:That's peak rebellion right there— not endorsing the matcha craze. All right, but in a little bit more serious of news, we've got a lot to cover, as always, during today's episode. The first story that we're going to cover today is about, quite literally, the title of this story: "Having a Child in the Digital Age."
This was a story by Amanda Hess, who’s a critic at large at The New York Times, about her experience of parenting her son, who she reveals in the course of this reporting was diagnosed prenatally with Beckwith-Wiedemann syndrome. This story was so profound to me. It touched on so many different dimensions of the themes that seem beneath the surface of the conversations that we have with our parents in the NICU. I would like to read a little bit of the story as it particularly relates to those first moments of parenting, which is getting prenatal ultrasounds. Amanda writes:
"The doctor wrapped on the door. He told me that he had seen something he did not like.” This is in reference to the prenatal ultrasound, I believe, at seven months. “He wondered if it could be a case of— he said a strange word, then another, then the word 'syndrome.' The kidneys and torso were measuring large. He explained the baby was growing very fast. The tongue was protruding from the mouth. It’s not supposed to do that. The information passed uncomprehendingly through me. I would be assigned a genetic counselor, a prenatal psychologist, an obstetrician who specialized in high-risk pregnancies. Amniotic fluid would be extracted from my uterus and sent for a battery of genetic tests. I asked the doctor to write the syndrome’s name on a piece of paper. 'Don’t Google it,' he advised me. Of course, as soon as I seized my phone, I did.”
Guys, what did you make of the article? What do you think about the Dr. Google phenomenon and the conversation among online users later on?
Ben:Yeah, I mean, this is something that irritated me profoundly. Mostly because I think it's everything that I make a point not to do with my patients. Number one, if you have a certain degree of certainty when it comes to diagnosis and you're going to utter the words, you cannot put these words on paper and say, "Don’t look into this." What are you talking about? Like, are you really expecting a prospective parent to not try to learn more about a potentially life-threatening condition? Because, again, we don't know what this syndrome is, and expect to just wait patiently for a couple of weeks until the next appointment can reveal more information? What are you doing?
It's kind of neat during the process of the article that in the first few paragraphs, you can kind of play board review games and be like, "Alright, let's see if you can make the diagnosis." But once you sort of settle on Beckwith-Wiedemann, you're not talking about a diagnosis that is absolutely esoteric, where there's one in hundreds of millions of cases. It's a fairly well-described pathology. [I would say to the doctor,] print something, try to have some control over the information and maybe say, "Hey, here's some information that I can share with you." And then I always tell my patients, if you want to Google it, then definitely Google it. But whatever you're going to find may stress you out. So make sure you bring it back to us so that we can have these conversations. Always leaving the door open for a safe space to actually communicate on this issue and not leaving parents sort of terrorized by the internet.
The other thing that we'll see in the rest of the article is, obviously, very late in the process, it seems, does the mother actually get connected with parent support groups, which should be the first step. The first step should be, "Hey, this is the website of the support group that I'm familiar with that has parents with children with Beckwith-Wiedemann. Check it out. And if you need to get in touch with them, I'll help you out."
Daphna:Yeah, I totally agree with you. I mean, I know we feel sometimes this like... it borders on annoyance of like other parents coming to me with all this information. But, like, having parents that are interested in their babies and are going to get information, we should be thrilled about that, right? To have engaged parents that want to do the best for their kids, I think we should capitalize on that. And I agree with Ben, I think we have such an opportunity to say, like, actually, I know as soon as you leave here, you're gonna sit in your car and you're gonna pull up your phone. So I’m gonna give you these three websites, because I think those are the most valuable for you to get some really good information. [The author] really finds kind of an online community. And I think not connecting parents, especially to those parent support resources, is a mistake. Because I think we give a lot of medical information. We know what we see in the hospital and the labs and all the tests we’re gonna run. But the way parents learn from one another about resources and logistics, I mean, we can't possibly even begin to educate families on that. I think connecting them to one another is absolutely critical to their understanding of what their life’s gonna look like.
Eli:Yeah. We've spoken on previous episodes about how removing ourselves from the conversation, whether it’s explicitly by saying, you know, “We don’t have a definitive diagnosis for this, so let’s not even talk about it anymore,” or implicitly with “Don’t Google it” but also I'm not going to point you in any direction, especially in this day and age, that is both perhaps suboptimal as a practice of medicine in terms of bedside communication and certainly unrealistic in terms of the way that human beings respond to voids and vacuums of information in this day and age. When we do not prepare our patients to confront all the information that they are going to come across in the pursuit of understanding, recognizing, reconciliation, mourning, and grappling with identity formation (which Amanda talks about as well), that we are really asking them to walk the plank of information on very complicated health topics that do sound very scary. And as Ben said, in some of these cases, they are pretty well characterized, actually. And we do have a sense of what may happen.
Ben:Yeah, specifically in this particular case, as we'll see, this online community/platform that the parents eventually come in contact with may not be a complete source of peace and stability.
Eli:Yeah, so let’s move on to that part of the article. So, later on, the story progresses. They are reckoning with the early days of life of their infant, and they’re referred to a pediatrician who recommends they consider joining a parent support group, which feels more in keeping with what we would think about doing, rather than just dropping someone off the deep end. And she writes:
"I searched for them on Facebook and requested access right away. When they, the Facebook group, unlocked their doors, I slipped inside gratefully. Just the size of the groups - they have thousands of members studying me. Parents shared stories, concerns, and photos of their children in sickness and in health. The groups were not straightforwardly reassuring. Often, they coursed with uncertainty and pain, but they were comforting in a deeper way in how they allowed me to redistribute the burdens of my private worries. The parents in the Beckwith-Wiedemann syndrome groups told stories about how their children were perceived. Every ignorant comment could be inscribed into our secret book, including the pediatrician at an appointment who said, 'She might not go to Harvard.'"
I read this to myself multiple times, and every time that I finish reading it, I’m a little bit lost for words. It puts so much language to what I’ve heard parents speak to in terms of the process of community-seeking and community-finding, with all of its warts and bruises, but also having a place to go where you feel that you can be understood, especially when you’re facing a healthcare system that isn’t really built for... you know, thinking about the practical elements perhaps of caring for a child with medical complexity. So I’m curious, Ben, Daphna, as you read this description of her first encounter with the great beyond of the apocryphal Facebook group, that we maybe think about with dual parts excitement and gratitude, as well as trepidation and anxiety about what may get posted there—how did you find her characterization of that Facebook group, and how did it resonate with your experience?
Ben:I thought it was an interesting ambivalence that she described, because I think there is an implicit contract when we join these groups, which is that this is going to be a public place. That can be difficult for parents because they’re not seeking to share. They’re seeking to actually collect information. So sometimes the line can be so blurry, and you’re like, "Okay, so what am I supposed to do here? Am I supposed to post a picture of my kid? Where can I get the information?" And so I kind of don’t particularly like the fact that a lot of parent support groups now are only focused on social media platforms. I miss the days of a good old website where you could actually grow through the process of learning, parenting, and potentially even becoming an advocate for your child and other children with similar conditions. So, I think it felt like a very traumatic experience to me. And that’s something that is probably not very easy to deal with, especially when you’re trying to grasp the reality that you’re being dealt.
Daphna:Yeah, I agree with you. I think what I garnered from it was that it helped prepare her for some of the situations they would find themselves in. Social media has a knack for helping identify names and some of the emotions people are having. And she expresses some of that, especially when people say things about children like hers and their appearance and how they’re dealing with those things. We can’t inform parents about that if we haven’t lived that. We can’t tell them how to take that in their hearts each day. So, I can see why she found that valuable. I liked this sentence: "But social media algorithms misread my interest as a broader enthusiasm for child medical content. Suddenly, night feeds coursed with unrelenting pediatric dramas." And that’s the tricky thing about social media—you know, she wasn’t now just part of the Beckwith-Wiedemann group. She was part of all these medical, high-complexity groups. So sometimes you get a lot of information that is adjacent to what you’re looking for, but not exactly what you wanted or needed. I think that’s the double-edged sword of social media in general.
Eli:Yeah, it’s so funny how much I kept thinking to myself what a gift social media is in terms of giving parents permission to have emotions, to name emotions, to grieve. And what a gift it is to take someone out of the territory of feeling alone, reckoning with something that they, the words of which they can’t even pronounce, let alone begin to prognose what a life looks like. And what a challenging place it can be from the standpoint of people distrusting medical institutions, looking for alternative solutions…all sort of well-intentioned. I think most of this comes from a really good place of trying to do right by their children. Yet, I think we all have seen the underbelly of that approach taken too far when it comes to questioning very basic interventions like erythromycin and vitamin K shots. I think it just feels like such a Faustian bargain at times of. Here’s the opportunity to not suffer alone, and also here is the occasion of which you are going to begin to at least have some of this misinformation wash over you, perhaps. To the extent the algorithm labels you as a "medical mom," associates medical motherhood with any number of tropes about alternative medicine or distrust of institutions, and starts feeding you information that it thinks you’re going to react to—of course, that’s the intent of the algorithm, to provoke—it’s going to provoke you with new, surprising opportunities for ways to think about treating childhood illness. That’s where it gets dangerous.
Daphna:Yeah, you know, I’m realizing I do a lot of handing out parent support information, and I’m recognizing that I always say it with a disclaimer: like, "You’re going to find all kinds of parents on here, and some of the information will be very useful and some of the information will not be useful. It may be scary and may not, even with the same diagnosis, impact your child at all." And so you just have to keep that in mind when you go on there to get information. And I think that’s true for every single one of us, you know, about collecting information online, collecting information on social media. We were just talking about this in the neonatal community. So many people have left social media because the algorithm was feeding them so many different things. And we think we are missing this opportunity. That was so great about our community, where we were like conversing and talking about papers every single day, bringing data to the bedside. And so I think hopefully we will all learn to better curate our feeds so that we can get the information that we want.
I think the last piece of this article was really just, in general, about putting our medicalized children on social media and the potential risk to them, their privacy, things like that, that I think we’re all worried about with our own kids on social media.
Eli:Someone should do a study on the likelihood ratio of getting posted on social media if you're a kid without any medical complexity versus if you do have medical complexity and what that means for later in life. Whoever is not doing the poo milkshake research, this is your next 10-year opportunity.
One other thing, Daphna, that struck me at the end of the piece is an allusion to a certain kind of parent advocacy that I think we've probably all experienced, for better and for worse. Hess uses this really interesting anecdote about watching the movie Dumbo the elephant, and the little elephant, I guess, is Jumbo, and he gets nicknamed Dumbo. I don't know. I haven't seen the movie. Anyway, Jumbo, Dumbo, this poor elephant has some big ears and gets bullied by the rest of the elephants because of his ears. Dumbo has a wonderful mother who kind of, I think, literally slaps another elephant. I don't know, I’m imagining this whole thing. But all this to say, Hess writes, “Dumbo taught me that a good mother wielded righteous anger on her child's behalf, but also that this anger was dangerous and it could cause problems for my son. I could become one more burden he was expected to resolve.” I thought this was another really interesting reflection. I think we have probably all, even in my short career so far, I have said to parents, your child needs an advocate like you and meant it authentically. And other times I've said it and felt like that was a challenging room to walk into and walk out of. I think, again, it presented this really nice duality of the benefits and the challenges associated with exposing yourself to relentless information and what that can do. I wonder if you guys had any other thoughts about this medical mom virtual identity that seems to actualize into a physical identity, also in terms of the way you encounter the healthcare system.
Ben:Yeah, I don't know about the analogy with the Dumbo movie, because I don't think that the takeaway should be that you should slap other people like in the movie. That being said, what would that look like, practically speaking, if a mother had to be a staunch advocate for their baby and their condition? At one point in the piece, it mentions that there's a lot of mention of the protruding tongue, which is typical for patients with Beckwith-Wiedemann. At some point, the mom mentions that she gives the passport application at the post office and the government employee at the desk says they can't accept the photograph because of what the baby is doing with his tongue. It’s so insensitive. And I think that this would have been the indication where you could have "slapped" the person and be like, how are you not more sensitive? But I think that the advocacy would probably not take the form of the slap like in the Dumbo movie, but more of a reflection on why you're assuming that my baby doesn't have a medical condition, doesn't have any form of disability. Trying to shift the mindset is probably the "slap" in the metaphorical face that a lot of us probably need in society today. Just get off your own little box and try not to make assumptions for other people and try to be a little bit more open-minded. I think that might be a beneficial thing for all of us.
Daphna:Yeah, I think a lot of it has to do with bias. People are so concrete in whatever job they're tasked to do. They don’t want to do anything extra than has to be done. For these parents of medically complex kids, it must be just exhausting dealing with insurance companies. I don’t know how to deal with my insurance company. I don’t talk to them that often. It’s exhausting. The bills, the school, the daycare, trying to explain over and over again the needs for your child. They are the advocate. So I don’t blame these mama bears, Dumbo mama types for being really fierce about their advocacy because they're exhausted from having to explain the needs of their child to get what their kids need. So, I don’t know what the message is, but I think this is a reminder to us about how difficult medical complexity is, even in a child that’s potentially “not that medically complex.” We just have to meet them with understanding, kindness, and respect for the advocacy that they have to do to make it through the day.
Eli:Yeah, exactly. To that last point, I was going to say, I think so much of that ferocity comes from a place of necessity — they have to swim or they sink. There’s a really nice portrait at one point in the article about them just getting air-dropped at home and the nebulizer machine, I think, or the O2 machine arriving at their house. They're like, I don’t know what this is. It’s just ubiquitous in our population. If nothing else, this article was a reminder of just how much room we have to improve our partnership with individual parents and accompany them on this journey for the long haul. We need to prepare them, manage expectations, and provide them with resources in a way that doesn't leave them with the necessity to do any of these things themselves. Also, we need to recognize the value of social media, because it often gets a bad rep, but this article really demonstrates that it has advantages, and maybe we can do a better job recognizing those.
Ben:Eli, what other article are we looking at today?
Eli:We’ve got a lot of other articles. It's not just one, Ben. You thought we were done with just two. I encourage everyone to read Hess's piece. She also did an interview on Fresh Air. And, stay tuned, we may have more from The Incubator on this.
But the next article for now is about some really interesting emerging regulations trying to ensure that infant formula is as safe as can be [“RFK, Jr., Wants to Make Baby Formula Safer, but Trump Budget Cuts Imperil That Effort”]. The beginning of this story, you could trace back to the beginning of time. Certainly, there’s this post-traumatic stress associated with the formula shortage. There’s been lots of conversation around the formula supply chain and whether it is robust, as well as whether it is pure. All of this leads into an announcement on March 18th by the administration that they are rolling out something called Operation Stork Speed, an allusion to the very well-known Operation Warp Speed during the pandemic. And Operation Stork Speed is aimed at “improving the safety and quality of infant formula,” including doing a number of things such as increasing testing for heavy metals and other contaminants, as well as “launching a comprehensive review and update of infant formula nutrients — the first such effort by the agency since 1998.” This comes on the back of a report by Consumer Reports which analyzed 41 formula products and found that many of them had some level of heavy metals, including arsenic and lead, as well as so-called “forever chemicals” or PFAS. There’s more to the story, but just on its surface, what did you guys make of this announcement of Operation Stork Speed and the context around it?
Ben Courchia:I'll take this. I think my initial thoughts were that this is probably an initiative that begins with good intentions. I think that the objectives of Operation Stork Speed, which is to try to regulate more closely the content of formulas in the US, sounds like a great idea. That being said, I think that the strategizing of how this is actually going to be done leaves a lot to be desired. The main issues are, again, the framing of this particular mandate from the government, which basically gives the lay public the impression that the formulas that are currently available on the shelves at Target and Walmart may not be so safe for your baby. They're also not coming through with an announcement on how this is going to get fixed immediately. And I feel like this is going to leave parents with a lot of distress about, well, what am I supposed to do now? If the formulas that are FDA-approved may not be so safe for my child, and there is not another alternative, and there's not something that is being rolled out in the next week or so to make it safe, what are we supposed to do? And obviously, the article does mention the issues that came about with the recall for both Abbott and Mead Johnson. And I think that this is going to create a lot of distress. And I think this is something that we will be seeing coming to the bedside in the NICU very rapidly, as parents may be even more reluctant to introduce formula feeding for their newborn, especially if it's a critically ill neonate in the NICU. So I think that the idea mentioned at the end of the article that the government would love for these companies to have some form of oversight that goes beyond their own oversight and that we should not take them at their word that everything is fine, and that the government should probably have a little bit of a look inside under the hood to try to make sure everything is OK. Sounds like a great idea, but it's framed everything in the sense that formulas are probably “contaminated,” and there's nothing right now that's going to be done to change that in the near future. So that will leave a lot of people sort of agonizing for what to do next.
Daphna:Articles like this, updates like this, are exactly why we created Neo News, because parents are going to come talk to you about it. And as a neonatal healthcare professional, we don't know what they're talking about. They're going to lose trust in us immediately. So, I mean, I think it's important that we're understanding what people are hearing. Like, I think some people are like, "Gosh, I could just worry about my math, my home and my work life, and I can't even listen to the news right now." But parents are going to come in and ask us, and if we're like, "What are you even talking about?" they're going to be like, "You should know." Ben mentioned this before, parents are coming to us with all kinds of different other formula choices. I think we have to respect where they're coming from and understand why they're putting up such a fuss about using their organic formula, European formula, XYZ solution, because they're scared. We just have to, again, come from a place of understanding and support and respect for their advocacy for their child. These are not new problems. This is the same formula we've been feeding for decades. We're currently in this era where people are like, well, you either care about supply or you're like with big pharma, something. I think most doctors really do care about what's in the food supply. We definitely care about what's going into infant baby food and formulas for sure. As much oversight as necessary. I think it just is missing a broader picture that like we have all these environmental exposures that people are just not even talking about.
Ben Courchia: Yeah, and I think that like we were mentioning in the earlier article, sometimes you're like, "Where did you get that information? Stop doing your own research on Google, whatever." But this is coming down from the US government. The president's appointee for HHS secretary is saying those things. So it is perfectly reasonable for people who are not medical professionals or who even are medical professionals to say, "The government is saying this. I should be taking this seriously." And they are perfectly entitled to this stance. So yeah, this is going to be a lot of heavy lifting for us in trying to mitigate sort of the anxiety that could be caused by this announcement.
Eli: totally agree with both of you guys that this is like almost exactly why we started doing Neo News, because what does this mean? This means that the next time that we offer fortification for a 32 to 34-weeker, someone may say, because they are reading the news and engaging with information including with health authorities, which is exactly what we want them to do, that they may say, "Wait a second, aren't formulas contaminated?” Or they may be even more sort of opinionated than that, and they may say, "Well, I just don't feel the risks are worth the benefits," that could lead to prolonged hospitalizations, that could lead to discharges on suboptimal feeding regimens, that could lead to longer-term growth faltering.
Daphna:We're definitely seeing it in our unit for sure.
Eli:My soapbox, as everybody knows, is to see if we can also stimulate some engagement from the neonatology community on issues that our patients are thinking about and see if there's a way to engage beyond the things that we can do when we're on the unit. And in this situation, the story doesn't end at March 18th with this announcement. On March 27th, nine days after the announcement, is when DOGE, the Department of Government Efficiency, announces that they are cutting the Health and Human Services workforce by 25% and closing a whole bunch of the offices. From the reporting that I've done looking into these issues, when you think about the class of government worker who is getting affected by this, it's new government workers, so the pipeline of future talent. And the second class are the people who do the completely non-obvious jobs, of which there are two really critical ones. One is data collection. All these “administrators” are the people who are responsible for collecting and maintaining the data systems that ensure accountability in this country. The second are the people who work on things like enforcement. So this is a case where if you look at the letter of the announcement from Health and Human Services on March 18th, that they say, we're going to do these things with no specifics. And then nine days later, lay off a whole swath of people who would be exactly the people who would work on these issues. And then what you start seeing is representatives in the House come out and say, "Well, actually we want some concrete sort of legislation guidelines around this." So on April 14th, Representative Pallone out of New Jersey introduces a bill called the Infants Act, which goes to do a variety of things, including regularly inspecting facilities for infant formula. So this goes beyond saying, "Hey, we're just going to make sure that formula is OK." It says, "Well, here's how we're going to do it operationally. We're going to audit formula producers every quarter to do this." And that bill, of course, is sitting in Congress doing nothing.
So all of this to highlight, I think there's an opportunity for neonatologists to partner with patients on this and say, "Yes, I understand that we all want formula to be as safe as humanly possible. Let me, first of all, try to reassure you that if we were to test lots of different fluids, if we tested Gatorade in Costco bottles, I'm sure we would find trace amounts of all the same stuff, because these things are endemic in nature." And second, that we can do more to try to ensure the safety of formula, including by advocating at the federal level for things like the Infants Act, which would put enforcement authority and operational capacity behind these well-intentioned announcements. And invariably, when the federal administration does what it has tended to do both in the first administration and in this time around, which is defer to the states in terms of operationalizing some of these responsibilities, neonatologists can step up at the state level and say, "You know, we want to make sure that formula is as safe as it can be for Floridians or, you know, folks in Massachusetts or wherever the case may be." So that is my soapbox.
Ben Courchia:This is actually what gives me the most anxiety. We are in the DOGE environment, in which the government wants to go and look at how they can be more efficient, go at it. But at the same time, if you're putting out something like this, it has to be paired with, here's how much we're investing to make this a reality and make sure that this is actually done in a timely fashion and done effectively. And it isn't. So obviously, as a provider, I'm like, how are you going to—like you're cutting costs left and right, and you're putting out a project that's going to be resource-intensive, where is that going to come from? And what else are you going to cut to actually make that happen? Because it's basically a string. Like, if you're pulling on one end, the other end is going to have to give out. So it's very stressful.
Eli:We all agree that you don't have to keep all of the ovens on warm if you're not going to put any food in the oven. But if you're trying to bake bread, you have to keep the bread oven on. Everybody knows that the government's inefficient. Everybody knows it's redundant. There can be very well-reasoned existential arguments about whether the point of government is to be efficient or whether it is to be redundant when the rest of a capitalist society is designed inherently around efficiency for good reason. At least in the cases where we say we're going to do something about something, that is the case to ensure accountability that resources will be devoted to the promises we're making, lest this become an announcement that seeds considerable distrust in something that we use every single day without presenting any solutions to try to make the situation better.
Daphna:I liked your point, Eli. I mean, we can only do so much about what is happening in the government, but our stories are valuable as people who care for babies. And I think when we talk to Shetal Shah, and he says, "Your voice matters, your experience matters. If you go talk to your representatives, change happens." And I think that's really exciting. My hope is that the only way for us to take back medicine is to partner with patients and families. Like right now, what the system has created pits physicians and healthcare professionals against patients when we really should be united against things like, I don't know, insurance companies, things like that, and pushing the government to do things that are in the best interest of the patient. So I really like that thought. There are lots of ways for people to get involved in advocacy through the section on neonatal perinatal medicine. We've had a lot of advocacy episodes. People can take a listen and contact any of those people for those advocacy projects that pique their interests or come up with some new advocacy projects. But there are lots of people that want to help with that. I think it's an exciting time for people who are interested in advocacy.
Eli: Totally. And if you are a listener and you're in New Jersey, reach out to Congressman Pallone. This is your right as a member of his constituency. And you have a very clear opportunity in this case to do something to support the health of babies.
Okay, next. Small little policy. Might've heard of it. Tariffs, have either of you guys heard anything about tariffs? Anyone mentioned that word to you? Is that a word that you were thinking about like two months ago? No, no idea. Right, anyway, tariffs, it seems, are already trickling their way across the healthcare supply chain. Healthcare supply chain is a topic that I love and we can go so deep on and probably every last one of our listeners will tune out. But suffice it to say, we have sort of a triad of pieces that we reviewed for this episode: one [Hospitals begin to grapple with tariff fallout], which speaks to the impact of tariffs on hospital goods, in particular, the super basic low-cost things we depend on every day, all the kinds of things that during COVID went short, and we had a heart attack about. And now we're at risk of going short of those things again, should the tariff situation, which is ever-evolving, begin to implicate those goods.
The second element of the potential tariff impact was an article that we looked at on drug shortages [Will pharmaceutical tariffs achieve their goals?]. Of course, anyone who's practiced medicine in the United States knows that drug shortages are ubiquitous. Last I checked, there were 276 last quarter. That includes all sorts of intravenous fluids that have been short before, and especially since Hurricane Helene hit North Carolina. So if you guys are like me, you probably have a very unhappy animated picture of an IV bag that pops up every time that you want to write for fluids and says, "Are you sure you want to write for fluids? And also, can we do it through Pedialyte or do we have to do it through fluids?" And this article speaks to the potential impact that the tariffs would have on the overall drug supply chain and especially a category of drugs called generic sterile injectables—generic IV drugs like IV fluids that are especially complicated and especially fraught and especially low-profit, which makes them vulnerable to traverse.
Daphna:We have a delightfully animated NICU pharmacist that comes to us when we have a shortage.
Eli:My God. A humanized version of my IV bag. That's great.
The third article [Independent pharmacists warn of higher prices and shortages from proposed tariffs] speaks to the impact that these tariffs could have on pharmacies. For anyone who hasn't been following the research on pharmacies, there is a worsening ecosystem of pharmacies across the United States, especially in rural regions where there are more and more what are called “pharmacy deserts” every year. And because of the way that these drugs are negotiated with payers, there's really no way for pharmacists to do anything other than sort of eat the cost increase, which puts them at peril in terms of their business. What did you guys think of this triad, and how are you thinking about the world of medicine in an ever-evolving landscape of tariffs?
Ben:I don't have much to add, to be honest. I think that this is something for us to be aware of. I think that physicians have to just know that this is probably going to start taking some place on the agenda at an upcoming meeting within the hospital walls. And I encourage physicians to not forget the very large margins that hospitals are able to apply. There is still room to deliver good care, even under this constraint. So just stand up.
Daphna:Yeah, I agree. I mean, we utilize not that many medications, right? So we just have to make sure that our babies can get what they need. I was especially taken by the pharmacy one, where these smaller pharmacies are going to be pushed out. And I recognize how many of our medications that babies go home on need to be compounded, and they don't go to the big retailers. They go to these small pharmacies that provide for our families. So that's going to be even harder for our patients at discharge.
Eli:We won't go much deeper on this, and we'll post these articles for everyone to look. I think the other reason this is relevant for our population is, we might be facing a world where it's increasingly difficult for patients to get their vitamin D or increasingly challenging for us to think about alternatives, because of these shortages. All of those decisions are ones that we're going to have to make in a tariff-influenced world and also that we'll have to explain to patients. They may do their research. They may see that the standard of care is one thing. In all of pediatrics, obviously there are huge patterns of off-label use of medications which we use routinely, but it is not what the FDA has approved it for. If we get in a situation where we have to do more of that, I think, again, it's an opportunity to have those conversations so we don't lose trust with patients if we have to make decisions in a pinch, especially if they're in a situation where they are doing all the right things, looking at the FDA-approved uses of a certain medication, saying, "Why are we using it for my child? It's not approved for that." I think this may stimulate lots of discussions that I think we can and have to be active participants in.
Let's keep moving. The next article [“The Number of People Over 40 Giving Birth Surpasses Teens for the First Time”] is sort of a really interesting discussion of a new statistic from the CDC about birth rates, and in particular birth rates in birthing people over the age of 40 compared with teens. For the first time in history, in the United States as far as we've kept the data, the fertility rates and the delivery birth rates are higher in birthing people over 40 than they are in teens. On one hand, that is a monumental public health success in terms of the world of family planning, and also comes with a new set of challenges in terms of managing a population that is categorically be defined as high risk. Daphna, Ben, what did you think of this statistic and how do you think it'll continue to impact what we’re doing on a day-to-day basis?
DaphnaWell, I think people in the healthcare profession are not surprised by this at all. We've always been a group of people who are having babies later because of medical training and things like that. And the article goes through a bunch of reasons about why people are giving birth later in life. We talked about some of those reasons on our last episode. But I think it was a pretty balanced perspective that there are both pros and cons to having these “older parents.” Obviously, we know that after 35 or 40, you have these increased risks of miscarriage, stillbirth, gestational diabetes, preeclampsia, chromosomal issues, SGA, and the need for a C-section. But there are some of these other societal things that could be good for babies – potentially furthering your career, more financial stability, kind of knowing yourself a little bit better, having the opportunity to read and have the other resources for your kids. I don’t know what the right answer is. It is what it is. And either way, whether very young babies are born to very young people or very old people, there’s much higher risk of seeing them in the NICU for sure.
Eli:Great. And I think anyone who takes a look at that article will also see a really interesting set of anecdotes. They interview three birthing people who delivered over 40. And all of them have really interesting reasons for describing why they waited. We’ve talked in previous episodes about fertility and those being really high-stakes decisions and how people are thinking about it. And I think this is an opportunity for us to engage with these families and say, help me understand your situation. Help me understand what prompted you to think about expanding your family at this juncture, and what are the unique ways in which we can support you? Parenting at a very young age comes with its challenges. And parenting at an older age also comes with unique challenges, perhaps.
So let’s move on to our last segment here. This segment is called, You May Have Heard. We’re going to touch on a few studies. Guys, you may have heard, RSV vaccines—we’re doing them! And you may have heard that they’re working. They’re really, really, really working. The MMWR just came out with data that showed the rates of RSV-associated hospitalizations during the past flu season were lower by an estimated range of 28 to 43 percent. So, over a quarter and perhaps close to half the levels of hospitalizations for RSV because these kiddos got the vaccine. This is something that I think has transformed from a “hey, by the way, ask the family if they want to get an RSV vaccine and if they don’t, we can bump it to the PCP” to like, “This is an item on our discharge checklist and we’re definitely going to do this.” But this study only kind of reinforced the importance of this conversation for me. Daphna, Ben, any other takeaways from this study?
Daphna:It’s interesting because actually, of all the vaccines, parents seem to be most willing to get the RSV for themselves and for their baby, compared to the other vaccines or other antibody situations, which I think is really quite fascinating. I’m glad that it’s working. The CDC put out some stats—for example, the overall coverage with the RSV vaccine for pregnant women was really only about 40%. it seems like we can do work there. And same thing for infants, in this month of April, they said 57% of infants are reported to be protected against RSV. Maternal immunization makes up about 12%, and receipt of the nirsevimab, about 45%. So we’ve got room to do even better and keep, I guess, NICUs and PICUs free of those RSV admissions if we can.
Ben Courchia:Yeah, it’s the best-case scenario. I think that in the age of vaccine hesitancy, to see that something actually makes a dent in RSV, which is a devastating illness in pediatrics, to see that we’re able to see an uptake in that particular intervention, is just very reassuring and makes me optimistic.
Eli:Yeah, I love that. Like, new vaccine virus that maybe we hadn’t talked about a ton before the pandemic, but now we’re talking about more after the pandemic as it relates to trying to encourage people to get this intervention and that there is uptake and that we’re seeing the effectiveness of this. So just keep on keeping on.
Guys, you may have heard, blood pressures in preemies are a little unpredictable, a little weird. We don’t know a lot about it. Still learning a lot about little preemie physiology. I know I get lots of calls overnight about lots of vital sign changes in this population. Daphna, I know you picked up on this great article about blood pressure patterns in this population. What drew you to this article [Oscillatory Blood Pressure Values in Newborn Infants: Observational Data Over Gestational Ages]?
Daphna:Well, I think it’s really exciting. First, how do we treat blood pressure? Well, we’re not really sure how, but the first question really is like, is this baby hypotensive? And we didn’t really know. You know, we use all sorts of other parameters. Of course, there’s echo, of course there’s perfusion markers, but I thought this was a really neat paper, outlining some normative values for 22 and zero to the 41-weekers. I think we were missing some of the normative values, especially for the smallest, highest-risk infants who are also most likely to be treated for hypotension.
Eli:It showed that the blood pressures are higher in preemies compared to term infants at the identical sort of corrected gestational age. Is that a kidney issue with not enough nephron formation? Is that a hypothalamic-pituitary axis change due to sort of overstimulation or just immaturity of the axis? I think this article also opened up a lot of interesting physiologic questions for me.
Ben Courchia:Yeah, I think it’s always an interesting topic. I particularly believe that the future of blood pressure monitoring will be more related to hemodynamics. And hopefully, that can become a bit more of a mainstream neonatal approach. But this article is going to cause, I think, some discussion. Because obviously the dogma that we sort of are taught in fellowship is that arterial pressure should be about the gestational age, which again, has been proven not to be the best possible estimate. And it still shows in this article that mean arterial pressure should increase as corrected gestational age increases. But they do mention that after the first week, 2.8x the corrected gestational age is between the 90th and 95th percentile for systolic blood pressure. Another kind of heuristic or a rule of thumb that I feel might be easy to take up for people who are wondering whether a baby’s systolic pressure is too high or not. So yeah, we’ll see if that becomes popular. I don’t know what you guys think about that.
Daphna:Some of these values are much higher than I anticipated as the average values, but we’re seeing that. We just had this experience, and I said, “This baby’s blood pressure is soft,” and everybody’s like, “No, it’s fine.” And I was like, listen, I’ve been with this baby all week. Like, this is not this baby’s blood pressure. So, I mean, I think one, we have to take into those individual differences. But two, that even some of these very preterm babies are having blood pressures that are much higher than we were looking for previously. I also really liked the information about the transitional nature. Like, over time, we can expect that their blood pressure will change. It should go up. And I think we’re learning so much about those first two weeks in these especially the very smallest babies, how much of their physiology is transitioning. I agree with Eli. It opens up even more questions to study.
Eli:Awesome. And the question you both may find yourselves asking is, are we almost done? The answer is we are done. That is our slate for today. Thank you for playing on this episode of Neo News. Thank you, guys, for another great discussion. Thanks to the listeners for tuning in. We love your feedback. We need your feedback. We crave your feedback. If we’re doing things well and you want us to do more of this, let us know. If there are things we’re doing badly and you want to change it, or you want to yell things at us or throw rotten tomatoes at us, let us know. We want to improve. In any case, thank you guys. And I’ll talk to you soon.
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