 Magandang araw sa inyong lahat. Good day to all. I am Dr. Carmencita Padilia, one of the proponents of the newborn screening program in the Philippines. Join me in uncovering the wonderful story of newborn screening in our country. Together, let's zoom in on what makes newborn screening a comprehensive program for every Filipino here at newborn screening in Phobos. To ensure that newborns are truly healthy, they must undergo newborn screening, a public health program that helps determine if a baby is born with one of the more than 20 congenital disorders. Its importance cannot be overemphasized. If any of the congenital disorders is left undetected and not managed immediately, it can lead to mental retardation and even death. It was integrated into the public health delivery system with the enactment of Republic Act 9288 for the Newborn Screening Act of 2004. Now part of the field health newborn care package, newborn screening is being offered in more than 7,000 hospitals and birthing centers nationwide. It has also saved thousands of children. This educational series is intended for health professionals who deliver services of the newborn screening program. Whether you're online or offline, this program aims to further enrich your knowledge in newborn screening and be able to apply the highest quality service to Filipinos, especially during challenging times. We will discuss the very process of newborn screening from the moment the baby is born and into the continuing care available for newborns found positive. We will also zero in on the features and management of each of the conditions included in the newborn screening panel. We will also interview patients as well as their parents. And in keeping up to the challenges, talk over how facilities and centers manage to give quality service despite the limits brought about by the COVID-19 pandemic. This program is the newest educational platform for our newborn screening coordinators, one in every 7,200 health facilities throughout the country. We also hope that this series will also benefit the health professionals, physicians, nurses, need wives, med techs, nutritionists, as well as students in the health professions. So take a seat, get comfortable as you're in for quite an adventure here at newborn screening in focus. When babies delivered, ginagawang po namin ng newborn screening. Pag po sila ay premature o kaya meron po silang problem like sepsis or menumonya sila at birth, binig ginagawa pa rin namin ng newborn screening. Pero pag po sila ay may sakit, inuulit po ang newborn screening after 28 days. Dun sa nga test na nagawa, tinatawagan po ang magulang, tapos po ipenaliliwanag sa kanila kung ano yung nagindahilan kung ba bakit sila pinatawag, tapos po sinasabihan po namin sila na uuliti nyo ang test para iconfirm kung yung test na nag-positive ay talagang positive na sila. At the whole Philippines knows it already, alam na po ng parents ang newborn screening, kaya majority po ng parents wala na hong tumatang game pag pa newborn screen. Kasi na ipalibwanag na po namin ng mga previous year siyan, kaya aware na po ang parents. Ang nangyari pangaho, ayaw nilang gumana sa isang place na wala nago offer ng newborn screening. We do not experience now yung negative answer for the newborn screening before. Yes, we receive so many negative answers, pero ngayon po wala na po tumatang game pag newborn screening ang pagusapan. Last week, we discussed a number of factors which may affect the newborn screening result and thus may warrant repeat collection. This episode will be a continuation of that, but now focusing on the neonatal factors, specifically prematurity and low birth weight, and other neonatal factors affecting our newborn screening. Approximately 15 million babies are born preterm annually worldwide, indicating a global preterm birth weight of about 11%. In addition, it is estimated that 15 to 20% of all birds worldwide are low birth weight, representing more than 20 million birds a year. Newborn screening of this special group of newborns while on discussion and special attention to provide timely and adequate newborn screening. Today, we are happy to have two neonatologists, Dr. Maria Paz, Virginia Otaysa, Dr. Bing, the unit head of newborn screening center Northern Luzon, and Dr. Edgar Winston, position or Dr. Ed, the unit head of the newborn screening center in Visayas. Welcome to newborn screening in focus. We have Dr. Bing, Dr. Ed. Good day to both of you. In the last episode, we talked about the many factors that can affect a newborn screening result, but we decided to dedicate one episode specifically for the premature, the low birth weight, and the sick neonate. So let's start our conversation. Before we go into the results, Dr. Bing, what do you mean by prematurity? Ma'am, the premature baby is any baby who is born before 37 completed weeks of gestation. So that is a broad definition of a premature baby. What about a low birth weight? A low birth weight one is per the NSRC memo which is issued in 2014. We describe and define the low birth weights as babies who are born less than 2,000 grams. However, if one is asked again and I'm sure a lot of our listeners will be saying, oh, but we know that it is less than 2.5 kilos per the program, ma'am. We define our low birth weights as those babies born less than 2.5 kilograms. Okay, thank you. Thank you, Dr. Bing. And what is a sick neonate, Dr. Ed? Broadly speaking, a sick neonate is any baby who is admitted to the newborn intensive care unit. So if the attending pediatrician or physician has deemed it necessary that that child be admitted in the intensive care unit for obviously for intensive care and that's considered a sick baby. From an operational point of view, when you say baby is sick, he is unstable, meaning that the vital signs are not, are erratic. He may be having hypoxic episodes. He may be having hypotensive episodes. Usually they are on some kind of support. They are on oxygen or they are on T-POP or they are on a mechanical ventilator. They may be, they may have hemodynamic instability. So they may be on pressure support. They may be on fluid. And at this point in the baby, in the intensive care unit, it's more than likely on antibiotics already. So whenever you say a sick kid, whenever you say the baby is sick, he is fighting for his life literally. And therefore the baby is admitted to the intensive care unit for intensive monitoring. What we're hearing from Dr. Bing and Dr. Ed is that this information would be very critical for the proper interpretation of the results. So my first question and, you know, Dr. Bing and Dr. Ed is do these patients have to undergo screening? Maybe I can start with Dr. Ed. Yes. There are many metabolic disorders of genetic nature that will manifest as a sick baby or you know, low birth rate as well as well as premature. So your work sitting should be done in the same way as it is for preterm low birth rate sick baby except that when you are, when the attending is planning for the next use that they have to do the newborn screening early. Second, the newborn screening needs to be repeated for very important reasons. Whenever a baby is sick or premature or low birth rate, there are many external factors that came into play that made this baby premature or sick or low birth rate. And so these external factors, most of them are maternal will affect the test. And so the baby needs time to physiologically normalize and that is why it is important that they repeat test be done when the baby is recovering or has recovered already. Okay. Dr. Bing, would you like to add anything to the discussion? On our part from the NICU, most definitely it's a yes. All babies, particularly premature babies and it's very critical for us to get up those results to the initial baseline results prior to any transfusions and I agree with Ed. That's most often the reason why we have to really repeat the screenings for the preterm and sick babies. So two important points there, whether the baby is premature, low birth rate or sick, they must have newborn screening done. And as Dave said, there are certain signs and symptoms that may actually mimic a very sick baby and all the more we need the correct diagnosis. The second important point that they mentioned is actually that because when a baby is very sick or premature there may be a need to allow the physiological changes and that's a repeat is needed. But whatever the condition of the baby is newborn screening must be done. Okay. Now in terms of timing, we also heard from our speakers that from our families that if you're planning a blood transfusion you really want to get the sample and that was also emphasized in the last episode because once the patient has been transfused there's timing for the testing for newborn screening. So Dr. Bing, how does prematurity affect the results of newborn screening? Prematurity may give a false positive or false negative results. For example, in TSAH, OHV and IRT preterm babies are at risk for having a false positive initial screen for congenital adrenal hyperpillation and false negative initial screens for congenital hypothyroidism. So these babies require repeat newborn screenings on the 28th day of life prior to discharge whichever comes first. So it is really imperative that repeats for this particular subset of infants will be done. So it's not just actually the false positive you're saying that you can also have a false negative. So can you give just one maybe the most common example that you can share with our viewers on wherein you can get a false negative result? False negative results for TSAH for example or something hydroxy. The baby can also have a false negative for congenital hypothyroidism which is most common for Filipino babies. Okay so once again to our viewers especially to our coordinators remember that having a sick, a low birth weight and a premature baby is actually a red flag for you and we may have to make sure that we follow through. What about Dr. Ed? Can you share with our viewers how the low birth weight can affect the newborn screening results? Yes. Low birth weight babies are a different breed of babies. The very reason is that something happened inside the mother which deprived the baby or the fetus of much needed nutrients deprived the baby also of oxygen and the uterus so to speak has been inhospitable to the fetus to the point that the baby was not getting enough support from the patenta. So the baby was not getting enough support from the patenta when this happened it's called uteropacental insufficiency basically it just means that there's not enough blood going into the baby from the mother and the baby doesn't have any other source of nutrients and oxygen except the mother so when you deprive this the baby will not grow and the baby is no sense deprive meaning that when the baby comes out he will more than likely be motherish and the baby has existed for quite some time and in an environment which is not hospitable or which is not conducive to growth and so obviously when these babies come out they are highly stressed they are small they are considered growth restricted or motherish and so their metabolic profile may not reflect their true genetic metabolic profile they are often on antibiotics they are often on fluids they are often on total parent tarinotition because of their malnutrition we have to provide external nutrition or total parent tarinotition as soon as possible all of these factors will eventually will actually affect to a significant degree the initial result of your newborn screening in much the same way if you don't repeat the test having a false negative result will increase notably in the Philippines we have had several reports of a false negative babies with false negative results mostly in the area of genital hypothyroidism in this place perfectly with the history of a pre-term lower with baby because the TSH surge is delayed and so you will more than likely have either a normal initial TSH value or initial screening for genital hypothyroidism and so they fall for the practice because we thought they were all it was normal but really he was hypothyroid it's just that the TSH did not surge right away because of the medical condition of the baby and so the problem is that these kids will have a double whammy they will have two problems they are not only born premature or small in this case they are at risk for later neurocognitive difficulties but they may also have an undiagnosed genital hypothyroidism or other metabolic disorders which may also lessen or affect their neurodevelopmental outcome later on so serial screening has always been forward as a way to mitigate if not prevent conditions like this because we will and we are seeing and these are from worldwide studies on premature baby we will be seeing higher incidence of false negative results when it comes to screening premature and low birth rate baby Thank you Dr. Ed for emphasizing the importance of this special set of patients once again the premature the low birth weight and the sick baby and I think also this gives our viewers especially the coordinators an appreciation that when you send a sample to the center so many things happen at the lab it is not like a CBC or urinalysis were in when you get the test as a result that's it but in newborn screening there are many factors that will have to be considered including the weight, the gestation and so on so you talked about the serial the need for serial testing I'd like to ask Dr. Bing what is now because I know that we made an agreement that we will have a repeat on the 28th test now is so important for all the babies Okay but first let me start we always tell our genus Fs all the newborn screening facilities and implementers the important periods that they have to extract the blood and for us to test here at the newborn screening centers if we go back to why we have to do the serial it would go back to why this happens with them and this is because they have an immature body function the whole system is immature so if I may I will go through the immaturity of the hypothalamic and pituitary thyroid axis and why we have to re-screen them after so for example the immature baby would have an immature hypothalamic pituitary thyroid axis so the effect here is as what was mentioned by Ed earlier you would see some babies with normal TSH, low T4 so this infants who actually from the get go were born with congenital hypothyroidism but because they were born by premature they can be missed and the duration of this effect extends up to about six weeks of age so the period that we have to look at re-screen for expanding newborn screening for these babies particular for CH would be at six weeks of age as to the immaturity of the baby's liver enzymes there we can see some transient elevations of tyrosine, methionine and garactose as well as the other amino acids this also extends to a duration of about two weeks or so or about few weeks or so so again the importance is in re-screening them as to the kidneys the renal immaturity we find that they have elevated 17-OH spinamino acids which will stay for as long as the baby has not recovered or has not collected its age so again the importance of re-screening by the 28th day of life other conditions like hypothyroidism is also seen so that one has to be checked as well the same duration of effects levels and this duration even is seen up to 40 weeks gestation so that is the reason why we do have to have serial determinations for our pre-term babies Thank you Dr. Bing and that will actually really explain the case of the premature baby but let's say Dr. Ed this time on a sick baby do you want the baby is that needed? Dr. Ed? Usually for term sick kids they run into some issues for example they get transfused or they get multiple transfusions of FFP or IVIG or GCSF because they were so sick and so a repeat is important so they usually will follow guidelines for repeat re-screening after a period of transfusion and so they are also ready to follow guidelines for repeat ENDS for babies who have been on TPN or have been on other medications so the best time so what's not to miss in any case is really to do the repeat before they attempt to go because at that point they are presuming they are off antibiotic they are growing they are on full feed and then of course their vital signs are stable already so that may be the best time to repeat the screen just before discharge and of course there's always a risk when they go home they may be lost to follow up so the better thing to do that's why we put in in the protocol at discharge usually more for the term babies who were sick who were sick at birth okay so both are panellists explain that when you have a sick, a premature and a low birth weight baby the care does not really end patient goes home there is a need for monitoring so for our clinicians our pediatricians and the physicians who are listening on at the result of for newborn screening and still being monitored it is really your responsibility now to make sure that this test they actually follow through so I mean aside from the sick the premature and low birth weight Doctor Ed are there any other special cases that we must remember when we deal a patient with other special cases that we can discuss outside from what we discussed on have we missed out on anything Doctor Ed ma'am certain babies for example we congenital anomaly may need close screening or close monitoring as we know as you know physical or phenotypic manifestations of congenital anomalies usually are congenital anomalies as to the possibility or other congenital anomalies or disorders that can still be detected by expanded newborn screening so you know we always put in the we always tell the NSF whenever you see the genitalia doesn't seem to be correct this looks like a down baby this looks like a baby with pricemy 21 or other forms of pricemy this kid looks like he has some other congenital anomalies he is syndromic in a way that is already a red flag that you should probably be doing a metabolic spin also in which case your best tool is the initial newborn screening test this also gives definition an idea or the idea that you should probably be monitoring this kid very closely because some of these metabolic disorders may only happen when certain conditions happen for example when they get a viral infection if they develop the area and have a dehydration or they have some period of observation that's the time some of these metabolic disorders may actually come into play so there are triggers to certain metabolic conditions that they have to be aware of what I think is truly important is for clinicians and newborn screening to be aware of certain conditions that they may see in the nursery which may give them an important clue that they should be monitoring this kid closer so thank you for that explanation so what you're saying is that as a health professional now in the front line there may be other red flags that we should not ignore and the example that you gave is actually a baby with Down syndrome we probably an LFA TSH or a normal TSH so you know there's a lot of this I know that this is a concern among the health the newborn screening coordinator is about the charging when you have to repeat the test so is there an extra cost for repeating the test Dr. Bing can you enlighten us on this policy so while we know that the initial expanded newborn screening is covered by Phil Health as mandated in a part of the newborn package that is free care of the facility of the newborn screening center where they are assigned to so for example for newborn screening center Northern Luzon we care for regions 1 and 2 so all newborn screening facilities there send their cards to us and we run that care of the facility most specially we watch out for the facility takes care of those repeat collections so it's free especially if the initial result is positive or unfit anyway so just keep in mind that if a baby needs to be re-tested you can reassure the family that the newborn screening center actually will take care of the fee for the repeat test because we have to resolve a couple of things now I'd like to ask each of you you've described the challenges with results but as the head of your respective newborn screening centers this is the time to actually address our newborn screening coordinators listening to you now what are your common challenges in relation to the topic that we're discussing now maybe this is time when we can reach out to them and explain a message to them we'll start with Dr. Ed can you please talk to your vizagas vizagas the vizagas the vizagas regions are the most archipelagic of the entire country so we not only have individual island provinces we have island barangay and economic wise there's also a huge discrepancy between between cities that are well off and cities that are communities that are not so well off so we've always had lots of issues with transport because we really are archipelagic mostly in region 8 but we've also created some ways as to get the samples to us earlier so we can test them as soon as possible but what I'm really quite happy with is that our coordinators do not run out of ideas on how to get the job done I believe that they just need guidance so they've always been willing to do the new work but some of them because I guess because of the turnaround time and all of that they need a lot of guidance and so to us repeating re-educating NSF has been a very important step in trying to get our numbers up of course the pandemic has affected our operations perhaps quite severely in certain regions and not as badly in other regions so courier transport has always been an issue but again there are so many ideas that people are using that we are using now to try to get a hold of that situation as well at times we hear complaints about we're repeating the test too many times so why do we have to keep repeating it and that's been quite an issue for quite some time already I think the issue comes from the concept that you have to repeat a test for positive you have to repeat a test for contaminated you have to repeat a test for all of this and I think the solution is that if you get the job done right then you may have to repeat the test again and again except for premature and low birth rate baby and so there's a need for change in the fundamental concept that the reason we may be repeating the test is because the quality of the sample may not be as good or there may be some discrepancies in the way we feel that the filter card and so educating and that is I think one of the ways we are trying to get a better hold of our sample more importantly the emphasizing the the need for getting the job done right the first time because that eventually will save you more money that will actually save you more time that has been the the geographic location economic to get training and retraining new people and of course having to repeat the test but we're doing a lot of things to try to mitigate those issues of course educating people about differences in doing your work getting for the preterm and the sick baby requires a lot more understanding of the reasons why we have to do it so this is a perfect opportunity for us to share and to explain why preterm low birth rate baby are a special group that need to be monitored closely thank you Dr. Ed so you see how complex it is he talks about the challenges of even getting the sample but then when it reaches the lab deciding to repeat a test doesn't always mean it was poor quality because of the protocol in taking care of the patient what about doctor being any other challenges outside of this preterm sick and low birth rate that you've been encountering aside from the similar challenges of the career those who carry the samples to us my region's cover the coast up to the mountain ranges so it's really extra challenging for us the farthest from us is Batanes I would say the island province of Batanes our challenge actually because of the geographic distances is tracking down our patient that needs to have the follow up screening and we found out that because we work closely with our regional counterparts and this occurred with a patient who was coming from region 2 the collaboration is very important between the NSC as well as the CHD regional coordinators down to the people on the ground who actually bring in a particular just one baby for us to take care of last year however we lost a very sick baby but we were able to practice that way of coordination those for me are the very significant challenges from the program's point of view if we really want to track down and save as many as we can some babies are quite challenging to look for because of the length and breadth of the regions but really with close coordination with our program partners it becomes successful you can see how how dedicated and passionate the people on the ground are and we can do no less so for me aside from the program challenges despite the pandemic but we are trying to get over it we are trying to live with it embedding the new normal work style and we can do no less towards our NSFs while we cannot see them face to face we have developed that virtual monitoring system to oversee them their operations and look at the problems that they face while we cannot meet them face to face so very interesting challenges but something that we constantly try to work on and it seems that my program manager and his PDO team have I think solved for most Thank you Dr. Bing and Dr. Ed I really ask because it's really very challenging to be ahead of a lab and Dr. Bing is actually you have 700 or more facilities that you're serving am I correct Dr. Bing about 700 plus health facilities in Region 1 and the Cordillera in the car region Region 1 and 2 mam about 700 plus and then for for Dr. Ed who is the head he's running all the hospital when Dr. Bing was talking about even saving just one baby from out in the mountain that happens all over the country whether it's an island barangay as Dr. Ed was saying or up in the mountain or even in a very busy in NCR tracking down the babies part of the challenge and just imagine that when a baby has been premature has had low birth weight so we monitored so the challenges actually even goes beyond the discharge so I want to thank both of you for emphasizing that the caring for the children does not end from the screening but actually has to continue on until they go home to their families so we've actually tackled all the issues for the premature low turn and the sick baby I just would like to request our final our guests to probably give their final message First of thank you for the invitation to be part of this fun TV UP interview for the newborn screening of Northern Luzon the newborn screening program will continue its mandate to screen all Filipino babies within our responsible regions with particular vigilance in the screening of the pre terms the low birth weight and sick newborns the NSCs like the one we have in Northern Luzon will stand ready to support further testings when initial screens are positive until their conditions resolve and God bless us all in the Philippines Thank you doctor being Dr. Ed Thank you for the opportunity to be with you and to share our views on screening this special group of kids More importantly thank you for creating this menu for all of the newborn screening heads to actually participate and share their opinions and their views We're all facing extraordinary times what will distinguish us from the rest is how we solved it and how we lived with it and how we overcame this struggle of good ideas out there It's just how we're going to implement these good ideas that are continuing to be a challenge and I think this program that you're doing is one of those innovations that we should probably be doing more in the next couple of years So thank you for the opportunity to be here I finally so be after a while on Skype online and I am happy and sad to note that she's having the same problems I have So hindi ako nag-iisa I'm not the only one facing this struggle Thank you Thank you Dr. Bing and Dr. Ed for joining us today In this episode we learned that low birth weight and sick newborns are very special cases and must be treated with special attention because in the preterm in the low birth weight newborns feeling must be repeated and actually must be resolved for their other medical problems As stressed by our panelists false positivity and false negativity must be resolved and must not remain hanging because it's going to be very important for the doctors who will take care of them after discharge In terms must have a repeat test and the 28th day of life Dr. Ed was saying that sick babies must have a repeat test before discharge before we lose them before they are lost to follow up and understanding the problems of this subset will be able to help guide the doctors, the pediatricians and the nurses who will take care of them after discharge We've heard Dr. Bing and Dr. Ed they remain committed to ensure that the program runs throughout the country They serve hundreds and hundreds of hospitals throughout the country for so long a time now and as Dr. Ed said we live in a community where a lot of good ideas coming down from the ground and I think what we have to do now is to live on with the struggle the COVID-19 right now and more importantly so once again, thank you very much to Dr. Bing and Dr. Ed for joining us in this episode I look forward to another episode with both of you Maraming salamat Thank you Preterm, low birth weight and sick newborns are at risk of missed or unreliable testing due to many factors as discussed by our guest today to ensure reliability of newborn screening results our repeat collection has to be done for all of these newborns to our virtual audience please send us your comments questions or the list of topics that you want us to cover in our succeeding episodes email us at info at newbornsqueening.ph or you may tweet us at newborn screenings and also include the hashtag ENBSPH Before we end I want to again take this opportunity to present to you the new addition to our tools in learning our ENBS mobile app The ENBS mobile app is a one-stop hub for all ENBS health workers on everything they need to know about newborn screening It also features a rewards program that our health workers can use to earn points and use it to claim shop vouchers with our partners If we have already downloaded the app answer the quiz that will be sent to your inbox to earn those points We continue to improve our services as deemed necessary whether emerging challenges through an open dialogue about our experiences in newborn screening It is our hope that through this program we extend the sharing of knowledge with greater reach empower our frontliners improve connectivity with newborn screening coordinators and most importantly provide and parallel service to every family On our next episode we will be discussing the experiences of our newborn screening centers in the midst of the pandemic and how this affected the program This and more here in newborn screening in focus Nothing is more precious than seeing a child grow healthy and normal Let's realize this through newborn screening Newborn screening is a gift of life