Dr. Bob Underwood (Host): Welcome to Pediatrics in Practice, a CME podcast. I'm your host, Dr. Bob Underwood. As we get underway, I'd like to remind you to claim your CME credits after listening to today's episode. You can do so by visiting cmkc.link/cmepodcast, and then click the claim CME Button.

Today, we have the distinct privilege of talking to an expert in the care of premature infants, neonatologist at Children's Mercy Kansas City, Dr. Harriet Romald. Dr. Romald, welcome to Pediatrics in Practice.

Dr. Harriet Romald: Thank you for having me. I'm very excited to be a part of this podcast.

Host: Yeah. So today, we're really focusing really on a continuity of care issue. Premature infants spend time and sometimes a lot of time in the neonatal intensive care unit or NICU. But after their NICU stay, the care of the premature infant isn't complete. It's really transitioning. Isn't that correct?

Dr. Harriet Romald: That's perfectly right.

Host: So, can you walk us through the typical journey of a premature infant from NICU discharge to outpatient care?

Dr. Harriet Romald: Absolutely, Dr. Underwood. So, this topic is very near and dear to me because I was working as a general pediatrician for very many years before I moved into a neonatologist. So, let's talk about NICU discharge, right? So, NICU discharge can be very different depending on gestational age the infant was being born.

For example, an infant who had spent only a few days to a few weeks in the NICU will be very different than an infant who had spent more than six months or sometimes we have even had infants spend their first birthday in the NICU. For these infants, it's like a graduation party. It's like weeks or month-long preparation before we get to that festive date. Now, when we say premature infants, they're usually discharged by term corrected age, I would say. Some are overachievers and want to go home early, but some of them are like slow and steady wins the race. That's the attitude they have.

So usually, by 32 weeks of corrected gestational age, we will try to get them off oxygen so they can start working on feeds, because around this time is when the feeding skills develop. At the same time, we try to wean them off the crib. And usually, at the time of discharge, we make sure that the infant is able to stay in an open crib for at least more than 48 hours room air without any spells for three to five days. They're able to continue to feed well as well as gaining weight.

So, a couple of things here. In addition, if the infant is going home on G-tube feeds or sometimes like home oxygen or other home devices like trach vent kits, right? They usually need all the supplies. Caregivers need training, right? And then, usually, what we do is the parents spend a night with the infant to mimic like a home environment so they know how to troubleshoot these like, you know, equipments at home and things like that.

 One other thing, Dr. Underwood, that's very interesting, which I really want to highlight, is even though these parents-- they have been waiting for this discharge date for weeks and months, they're praying and then even fighting with us for the discharge date, when the date kind of arrives, they're definitely nervous, right? Remember, these parents have had a challenging rollercoaster ride during their NICU stay. For example, like, one day, they come in, the infant does excellent. The other day, they come in, the infant has some problems. We are stopping the feeds. We are putting lines in. So, it's a whole lot of emotional things that these parents have gone through. And now, at the time of discharge, they're taking their child who was surrounded by a huge medical team, 24/7 monitors to home where the parents are the monitors and the whole medical team. Now, that's a huge responsibility, right?

Host: It is. It is

Dr. Harriet Romald: Yeah. So, what I would say is a very important part of discharge readiness is making sure parents are comfortable, and they have all the needed resources after discharge.

Host: So, what are the most common long-term health challenges that are faced by premature babies when they go home? And how do pediatricians typically monitor or manage these?

Dr. Harriet Romald: So, the preterm infants commonly experience like chronic respiratory disease, poor feeding and growth, neurosensory impairments, and delays in cognitive and motor development throughout their infancy and even up to early childhood. Now, perinatal morbidities such as like neck or necrotizing enterocolitis as we call or intraventricular hemorrhage, all these will amplify these risks.

So now, let's talk about like nutrition, which the pediatrician plays a major role in, right? So, a nutrition discharge plan from the NICU, if mom wants to exclusively breastfeed, is five to six breastfeeds, which could be like exclusive breastfeeding versus like, you know, expressed milk via bottle. But they also will be getting two to three bottles of specialized preterm infant formulas to ensure complete nutrition. And these could be 22, 24 calories, or sometimes even 26 calories depending on their growth. Now, it is very important to continue this until the child reaches the 5th to 10th percentile on the growth curve, or at least the infant is 1-year-old based on the adjusted age.

Host: Wow.

Dr. Harriet Romald: Yeah. These preterm formulas actually contain excess calcium, phosphorus and iron, which is needed for these premature infants, and we advise that they stay on this formula at least until 52 weeks of corrected age or three months of corrected age to make sure that they have enough of those calcium and phosphorus.

When I was a pediatrician, this was the big topic. Like, when do I stop this, like, you know, preterm formula? When do I stop these calories? So, this would be like a rough guide for the pediatricians to help them, like, when they can stop or wean these things. Usually, depending on the growth curve, the calories could be weaned 22 or even 20 calories.

The other thing with nutrition is iron and vitamin supplementation, right? So, the AAP recommends that after two weeks of age, preterm infants not being fed an iron-fortified formula should receive a source of iron, which provides 2 to 4 milligrams per kilo per day. And this is usually continued until six to 12 months of age, depending on the diet. So, I would advise the pediatricians to keep them on the iron supplementation at least until they are completely transitioned to an iron-containing formula, or if they are breastfed, then when they transition to the diet, which has enough iron in them.

The other big thing is development. So, milestones should be assessed by corrected gestational age and not chronological age, and they're at risk of infections, especially with the respiratory infections like RSV and would strongly advise getting Beyfortus along with their routine vaccinations, which is according to the chronological age.

Host: Yeah, absolutely. So, do you have a way specifically that you collaborate with pediatricians to ensure this continuity of care after discharge? And are there specific protocols, communication tools, things like that, that you use to make sure that all of this information is conveyed to the pediatrician?

Dr. Harriet Romald: Okay. This is a very important and relevant question, right? And the most important part of a NICU discharge is communication with a primary provider to make sure that they have all the details that they need to provide continuing care for this infant. So usually, our care manager calls a pediatric office to make sure that they have an appointment either the next year or at least the day after discharge with the primary care.

The care manager also facilitates to make sure that they have appointments with special care clinic, which is like for all infants who are born less than 32 weeks of age, or if there is any surgical needs, multidisciplinary appointments. We even make sure that they have their WIC appointments and early intervention service appointments made.

Again, if there is DME needs, if the baby goes on oxygen or on G-tube feeds, we make sure that the DME company delivers whatever is needed to their houses, checks that all the ports, outlet it's in the house is functioning and is capable of fitting those oxygen tanks, ventilators. And sometimes if there is a very sick infant that the physician is concerned, or if the infant's weight gain is on the borderline and parents really want to go home, what we do is, as physicians, we make sure that we call the pediatrician and address our concerns and what to watch out for in their first visit.

And I think the most important thing I always tell parents is the discharge summary, which we make every effort to make sure that the pediatrician gets those before their appointment. And ideally, I advise the parents to take a physical copy of their discharge summary and keep it with them in their diaper bag at least for the first few months of life so that it makes it so much easy for the followup physicians.

Host: There's so much information that's included in that discharge summary. I think that's really important. So, we talked a little bit about this, developmental screenings, you know, it's developmental age that you really are paying attention to. So, what role do developmental screenings and early intervention services play in the followup care of preemies?

Dr. Harriet Romald: A very cardinal role is what I would say. So, all infants will be referred to early intervention services when we discharge them. In addition, if they're on G-tube feeds or thickened feeds for risk of aspiration, they will have follow-up appointments with Children's Mercy Occupational Therapy or occupational therapy nearest to their house in addition to the early intervention services.

Now, these preemie infants will need to have periodic developmental screenings, right? And, we also have another set of eyes at the special care clinic, where we follow them at three months, six months, 12 months, up to 24 months corrected gestational age. During this visit, which lasts for at least like one and a half to two hours, a physician within the clinic performs a physical exam focused on neuromotor assessment. A comprehensive team of therapists perform the Bayley skills of infant and toddler development. Speech, physical occupational therapy are there. They provide suggestions for the family for targeting developmental milestones.

Now, studies have shown that early intervention services have a positive influence on both cognitive as well as Motor outcomes during infancy. Now with cognitive benefits which actually persist up to school age or like all the way up to seven years of age. So, it is very essential for pediatricians to continue to advocate for these early intervention services for this vulnerable population.

The other thing we also recommend is like a hearing test at nine months of age, and then a blood pressure monitoring with every well visit to make sure that they do not develop any chronic kidney disease, which they are very much at risk of.

The one other recent test which we do is the Hammersmith Infant neurological exam or HINE test. This has come up as a crucial tool in early identification of neurodevelopmental disorders, particularly cerebral palsy by evaluating various aspects of a infant's neurological function. So, we are trying our best to incorporate this, which will be done at the time of discharge if the infant stays longer than two months, or at least at a special care visit.

Host: So, we mentioned earlier about the parents and their understanding and, kind of the big step of taking this child home. So, how do social determinants of health, like access to transportation, parental education, housing influences impact the outcomes for premature infants. You talked a lot about durable medical equipment. Those are going to play into the social determinants of health. Can you help us understand that a little bit more?

Dr. Harriet Romald: Yeah. It's very much, unfortunately, like these determinants. So, most of our NICU graduates have multiple appointments, right? There's special care clinic, OT followups, and feeding clinic, pulmonary and ENT.

Host: Huge transportation needs.

Dr. Harriet Romald: Exactly. In addition to the primary care. And remember most of the parents here have more than one kid and some of them are working. So, that's a lot of appointments and transport that these parents have. So, infants with perceived followup difficulty have higher incidences of severe sensory motor and cognitive disabilities, even after adjustment for perinatal and social demographic variables actually, and studies have identified that several potential drivers to loss of neonatal follow-ups, like including older gestational age, African American race and maternal cigarette smoking, as well as there are multiple protective factors too, actually, like older maternal age, BPD, and longer hospital length of stay. So, what we try to do is when we discharge infants, we make sure that they have everything they needed to make it to their first appointment, right?

In addition, we also talk to them about other resources. For example, if they have Medicaid, they will be able to get transport or sometimes Medicaid pays for gases, and all they have to do is you know, there is a 1-800 number at the back of the Medicaid card, which they can call, schedule for arranging transportation. And then, like you said, like you know, the infants who are on home equipment, right? Like, oxygen, ventilators, they need like constant power supply. And housing is very important to keep these infants warm and also to even prevent them from getting like infections and stuff. A social team actually does a tremendous work in helping these infants have a successful discharge life.

Host: So, are there any recent advancements in neonatal care or follow-up strategies that pediatricians need to be aware of as this transition is happening?

Dr. Harriet Romald: So recently, like telemedicine is being used for handoffs from NICU to community providers to provide outcomes for complex discharge. And I think CMH is working on like a rapid process improvement project on the PICU process, which is the parent care unit so that we can streamline the discharge process.

The other new process is like a holistic follow through one. This is a newer concept, which expands like the traditional follow up by incorporating social health equity concerns for the entire family beginning before birth and continuing into childhood. So, what it does is it shifts focus from standardized testing to functional outcomes assessments and child and family-centered goal setting.

Host: That's fascinating, because the family dynamics are really important and the whole idea of holistic, and social determinants for the entire family, I think you brought up things that we didn't really consider before. They probably have siblings, which would also play into the successful discharge of these new graduates. And speaking of which, what advice finally would you give pediatricians who are new to caring for NICU graduates?

Dr. Harriet Romald: So, I would say don't panic. It's a different set of population you're taking care of. And they need a little more or lot of extra TLC, like tender loving care and extra attention to my new details. Even the 0.05 increase in weight does make a difference for these babies, right? So, my advice would be pediatricians who are caring for former NICU patients should focus on developmental, nutrition, a family-centered approach, understanding that premie milestones are based on adjusted age, not chronological age, right?

And they should also be familiar with specific medical equipment the family may be using and prioritize immunizations to protect the infant's fragile immune system. Also, emphasize safe sleep. Limit exposure to public places. And this is a very important concept. Scheduling visits strategically in your PCP visit, like first appointment in the morning to minimize the risk of exposure to sick individuals in a crowded waiting area, right?

And in general, I would say when in doubt you can always call us. We are happy to answer your questions even if it's a simple nutrition question and all neonatologists will be willing to do that. You can also email if it's specifically a baby from Children's Mercy discharge at icncaremanagers@cmh.edu if you need more details on discharge documentation. So, we are here to support you. And let's go and grow these NICU graduates.

Host: Yeah, absolutely. And that support, as an emergency physician, always comes in handy, from my perspective because they are unique in caring for these premature babies that have recently come out of the NICU. Having that support from you neonatologists has always been really key for me as well. So, is there anything else you'd like to add as we close today?

Dr. Harriet Romald: Oh, thank you for having me. I really appreciate the honor and a pleasure to be talking to the pediatricians, my ex team.

Host: Yes, absolutely. Dr. Romald, thank you so much for being with us today.

Dr. Harriet Romald: Yeah, thank you. You have a good day, Dr. Underwood.

Host: And to our listeners, as a reminder, claim your CME credits after listening to this episode today, and you can do so by visiting cmkc.link/cmepodcast. And click the claim CME button. And for more information and for other important topics, you can visit that same site, cmkc.link/cmepodcast. If you enjoyed this podcast, please share it on your social channels and check out the entire podcast library for topics of interest to you. I'm Dr. Bob Underwood, and this is Pediatrics in Practice, a CME podcast.