 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 Focus. 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 over emphasized. If any of the congenital disorders is left undetected and not managed immediately, it can lead to mental retardation and death. It was integrated into the public health delivery system with the enactment of Republic Act 9288 or Newborn Screening Act of 2004. Now part of the Phil Health's 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 are 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 hope that this program will also benefit the health professionals, physicians, nurses, need wives, med techs, 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. Palahon namin siya siyobol ay mga ganyan. Unang-unang hindi namin alam kung may mga ganyan palang ano ang gobyan, no? Hindi mo na, lalo na pag sa bahay lang na nga nga na kasi, semprang sa edad ko ito, masanay namin ako. Naang pagkapanganak niya, hindi siya kaagad, ginaanon ang mga doktor, bali paga mga halawa after one month upunta lang sa health center, doon sila magpapabakuna ng mga polyo, ang ano pa ba yan? Mga tikt sa tiktas, yun lang magpapabakuna ng mga bagong panganak. Amam, unang-unang po nung nagdraining po kami nung 2011 po ata yun, simple yun na yung experience namin doon ay medyo may kabana, pag umano mag-extract ng blood sa baby, tapos, ninsan ay hindi madami, nag-tutusuk ko kami ng mga dalawang besi sa paan ng baby, hanggang nung bandang huli ay na palagang okay na rin po, kasi ang tiktnik po doon ay, ang nana ay palagin pinapainong ng mga gata, may mga ano po para, tuloy-tuloy ang pagsak ng baby po, at doon pala ay, makakakuha kami ng maraming blood po sa baby, isang drop po ay puno nakaagad yung circle. Tutupo kami, hindi po naka-karoon ang problema kasi sa 12 bar ang guys po ay halos kilala naman po namin lahat ang mga from the prenatal, din from hanggang mga nak, hanggang sa pag, ano, pag nyobon screening. Minsan lang po ay na uubusan kami ng filter card, ay hindi po maka-avail ang mga nana ay dahil po ay, ah, mahirapin ang buhay ng mga nana ay, pero yung mero naman po, talagang, uibili na rin sila sa, ano, minsang po, pinipinansang midwife na iba, doon po kami na papabili. Mabilis lang silang makuhaan ng mga information. Tapos pag sinabi namin na babalik ng ganitong araw o minsan, bago kami mag-discharge at less, after 24 hours po ay makaka nyobon screening po kami sa kanila. Sa mga kananayan na merong mga bagong panganak na baby, kailangan po ay maka expanded, expanded nyobon screening po, talaga kasi doon natin malalaman na kung ano ang mga sakit na baby at least po ay mas maagang maagapan. Last week, we discussed about sample collection, an integral step in the newborn screening process. For this episode, we will talk about factors that might affect the newborn screening results and what should be done about it. All the data collected are important in the interpretation of newborn screening results and are critical for the immediate recall of patients who have positive results in screening. Today, we will discuss the different reasons a baby may need a repeat newborn screen. We have Dr. Annalaya Elizaga, unit head of the newborn screening center National Institutes of Health. It serves the hospital and breathing centers of the National Capital Region, Region 4B or Nimaropa and Region 5, or Bicol Region. We also have Dr. Edgar Winston position, unit head of the newborn screening Visayas. And it serves all the hospitals and breathing centers in Region 6 and 8. Dr. Yeye, Dr. Ed, welcome to newborn screening in focus. So let's start the conversation. Dr. Yeye, why is it so important to fill up all the information in the filter card? Well, the information written on the filter card are all essential in the proper interpretation of results and therefore are critical for the recall of our positive screen cases. So let's focus on feeding. Why is it important that we take the box on feeding? If feeding information is not stated, we can run the test but then the laboratory would not be able to properly interpret results or galactosemia for MSUD as well as for other metabolic disorders because feeding has to be initiated first before we know if a baby has a metabolic disorder. So there has to be a protein intake in order to trigger metabolism. So this disorders would be released then unsatisfactory results specifically as missing information. So all the other disorders not affected by feeding can however be released. So what you're saying, Dr. Yeh, is that of the 29 conditions that are being screened or included in the panel, there are certain disorders that we need at least one feeding for the proper interpretation of the results. Yes, that is correct. So what happens? You get a sample where the information is not complete. What does the laboratory do? With regards to these cases? Well, for these instances our follow-up nurses at the newborn screening center would call the facility and request to send us a written certification that is duly signed by the NBS coordinator or the attending physician stating on the type of feeding the baby had during the time of collection. So by providing us with this information the laboratory would be able to update and give accurate results and release the appropriate instructions and recommendations. So just for our viewers every hospital or birthing facility has a newborn screening coordinator that actually arranges the collection of the samples and also the transport of the samples to the laboratory which we call a newborn screening center. So Dr. Yehinaw is saying that if the information is incomplete then we have to go back to the hospital or birthing center for the completion of the information. So she mentioned the follow-up nurses each of our newborn screening center actually has a follow-up nurse and all they do is to call up actually the doctor or the coordinator or the nurse or the midwife for assistance in completion of the information. So you mentioned feeding so I'd like to ask you how much feeding are we talking about Dr. Yehinaw? Well, as long as the baby has lactose feeding for at least 24 hours from birth that should already be adequate to proceed with the screening. So there should never be a delay in doing the newborn screening at the ideal age of collection because other disorders can be released ahead which are not affected by the feeding. So in other words if you don't like the result if you want the results to be complete then you know we should fill up that form properly. Now let's go to the other issues let's still go into the issue of feeding and let me ask Dr. Ed what about newborns where in the box they actually tick partial or total parenteral nutrition? Dr. Ed. Partial or total parenteral nutrition will have an effect on expanded newborn screening. As you know most of the component of partial parenteral nutrition are protein so we give them amino acid and that will affect the test. So we need to know this is a critical decision on the part of the newborn screener whether to tick that box or not because this has a significant effect of the result of the test. So how will the TPN affect the results Dr. Ed? The amino acid profile Maybe you can also give us an example for our viewers. Yes, ma'am. The amino acid profile changes with TPN as I said because TPN is mostly protein if you put in lipid which is part of TPN that will also affect the lipid profile of the baby and so when we do the newborn screening test we have to be aware that the patient is receiving exogenous protein at exogenous lipid because that will definitely affect the results of the test. So what Dr. Ed is saying is that when we really do newborn screening for the newborns we're expecting that the baby is really normal and not receiving any other form outside of the regular feeding and I think it's very important now to remember that that box and feeding is going to be important for the interpretation of the results so if you want to avoid a possible repeat or a false interpretation do fill up the box on feeding. Let's go to another issue on the form. What are the other things that we must inform the lab when sending a sample? Dr. Yeye What are the other information that we must inform our newborn screening center about the baby? We also need information if the baby had blood transfusion so if a newborn screening was done after a blood transfusion it's important to know first what type of blood component was transfused as well as the date and the time of the transfusion because this will help us determine on what instructions to give our facilities. So this information should be clearly stated at the filter part. So can you give us some specific examples on the issue of timing of blood transfusion and the possible result? Yes, if for example the expanded newborn screening was collected less than 48 hours after a PAK RBC or fresh whole blood transfusion then we have to repeat the test after 48 hours to test for all disorders so this is to ensure that we are testing the baby's blood and not the donor's blood. So there is also a need to repeat the test after two weeks because specifically we need to repeat the CH because blood transfusion can mask hypothyroidism giving us a false negative test for CH and this is also true for G6PD, for Galapagemia enzyme for biotinitis as well as for hemoglobinopathies because blood transfusion can also mask the absence of enzymes and the protein intrinsic to the red blood cells. So another test has to be repeated after 120 days following the lifespan of red blood cells these are four G6PD for Galapagemia enzyme for biotinitis and for hemoglobinopathies so by then we are sure that what we are testing is already the baby's blood. So the message I'm getting from you Dr. Yie is that if you can do the test before a blood transfusion that will be the best time because once the blood transfusion is actually the blood is given to the baby then there are so many other factors that have to be considered. That's the recommendation. So remember that if if you're considering a blood transfusion as much as possible do your newborn screening before the blood transfusion. Okay? So and how will be attending physician or the nurse or the midwife know that the test will have to be repeated? Where will they see this advice? Well we are releasing results for this with specific instructions so they would know how many days or after two weeks or after one hundred and thirty days. They are all indicated in the resource that will be sent to the facility through career and through calls also. So our advice is that we should do newborn screening before any blood transfusion so that we don't have to repeat the test. Okay but you're saying that if I have a baby and definitely had a blood transfusion the results of that baby will have that guidance in the result that you will release. Am I correct, Dr. Yaya? Yes ma'am. They will be called. The facility will be informed and then they will also be instructed in a hard copy through a hard copy that will be sent to the facilities. And I would also like to mention that this test are all free of charge. So the newborn screening center is replacing the filter cards used by the facilities for these patients. Okay so what Dr. Yaya is saying is that do not hesitate repeating the test because there is no added cost to the program. So if every the test will have to be repeated then by all means just submit the sample. I think this is also I'd like to highlight the issue of making sure that the parents have a copy of the result because if the test will have to be done after one hundred twenty days somebody has to remind them and having a copy will make a lot of difference. So thank you Dr. Yaya. Let's go to another issue because I know that there are certain maternal factors that may also affect the result. So Dr. Ed, can you discuss, maybe share with our viewers, certain maternal factors that may affect the NBS results? Sure ma'am. There are subtly a lot of maternal influences into the eventual result of the NBS test basically because the fetus derives most of his nutrient from the mother. So the basic thing is that whatever the mother condition is while pregnant will eventually affect the fetus. And if for example the mother has a maternal condition for example the mother is hypothyroidism and she's receiving exogenous thyroid hormone this will affect also the baby's newborn screening test for obvious reasons. So even if the baby does not have congenital hypothyroidism but the point is that the mother was taking exogenous thyroid hormone this will definitely affect the test. So you have to know number one, the screeners the laboratory needs to be informed that the mother is of certain types of medications which may affect the test. And then the laboratory must be aware also that the test may be affected by the maternal condition that's just one example for medication. Second, if the mother for example is taking steroids and the baby somehow has congenital hypothyroidism the mother was taking exogenous thyroid this again affects the 17 HP level of the baby which renders the test unreliable at that point in time. So what the laboratory just needs to know, what the laboratory just needs to know is that what maternal condition did the mother have at the time of birth and what if any medications were or was she taking at the time that she was having the baby. This will help us a great deal in interpreting the results and therefore reduce a follow up time or reduce repeat time and this will also put the heads up or warn our follow up people to follow up these cases or these patients those particular patients closely because the test was affected by either maternal medical condition or affected by certain medications that the mother was taking at the time that she was pregnant. So thank you doctor. I think that's very important information for our audience that any information about the mother any condition must be declared at the time of the sample is done so that you can better evaluate the interpretation of the results and in your experience doctor Ed, what are the very common cases that have been listed in the maternal factors in your more than a decade of experience with the program I'll ask the same question from Dr. Yehion. To us Pujenital Hypothyroidism has been most affected because the incidence of thyroid disease in pregnant mothers is rather high. So it's crucial that we know what medications were she taking was she taking proclthyroidism for example which suppress thyroid hormone production if she was hypothyroid that has an effect on the test also or the reverse may be true she has become so hypothyroid that she's not taking exogenous thyroid hormone that also will affect the test. So in our experience in the desire for the diagnosis of Pujenital Hypothyroidism has been affected by the relatively high incidence of either hyperthyroidism in mothers or hypothyroidism in mothers. We rarely see mothers on high dose steroids although be careful because some mothers who are asthmatic may be taking exogenous steroids as well during the times that they were on asthma medications. As you know steroids are a common medications given to anybody who has asthma and if she's on it for a long time that may also affect the test. Certain kidney disorders certain immunologic disorders for example hypthyroidismic lupus who are on chronic steroids that may also affect the test first but that's rather rare. To us, CH really is the one that is most affected by the high incidence of that among pregnant mothers. Insulin may not necessarily affect metabolic profiles if the mother is on exogenous insulin although insulin passes through the placenta when it makes its way to the baby. It mostly affects the lupus profile but in our experience it does not affect significantly or it does not affect the significantly metabolic profiling for this kid. At the endocrinology part that has really made a significant effect on our results. Thank you. Thank you Dr. Ed. At NIAH what are the frequent conditions that you've picked up that you think have affected the results of our results effect of results of our babies? So for the maternal conditions if the mother has a sample like what Dr. Ed mentioned earlier is taking anti-thyroid drugs that can also have an effect on the results of the newborn baby we can have a false negative result for CH so if we receive samples and then it is indicated in the card even if the results are normal we release them as normal but needing consultation with a pediatric endocrinologist I think that's a good point to maybe to share with the viewers that the information is important on how the result is going to be released in this particular case because of the additional maternal information on the mother there is an attic clause that may be consultation may be needed. This time let's talk about antibiotics because we have a lot of patients who actually probably on treatment for sepsis antibiotics affect the results of our screen. Well antibiotics is not really a contraindication in performing the expanded newborn screening however it should be stated in the filter card for our reference so there are however other medications that can affect results and one is the administration of steroids and this can give false negative result for CH and CH because of the suppression of their ating hormone and the 17 hydroxyprojects so dopamine can also give us a false negative result for CH for the same reason. So what I'm hearing from Dr. Yan and Dr. Ed is if you are a screener watching us right now any information about the mother and the baby are both important because it may actually affect the way the results will be interpreted. We will go into the details of each of these conditions if you are wondering why we're not going to get to more detail because in another episode we're going to talk just about congenital hyperplasia. In another episode we will be talking about congenital hypothyroidism. So overall I think what is important for the viewers to remember is that fill up that form, that card will actually include in that card will be important for the eventual interpretation of the results. Let me just discuss now in terms of timing because I know that especially now during COVID there have been problems about the transit time. Maybe I can ask Dr. Ed how has this affected the results of our screens? It's just all bad news we've had significant delays in the initial screen. We've had significant delays in repeat screening as well as on follow up. For various reasons may it be career, may be lockdowns, may be the hospital itself logistics may also play a very important role What we're trying to emphasize here is that we should really do the test on schedule. Do it at 34 hours at one minute after the baby is born and then process it properly and then just call your local courier to pick it up whenever that may possibly happen and then we will just make adjustments. As you know, the longer the time between extraction and the time testing is done, the more difficulties to interpret the results. And so the possibility of having a repeat test done increases as the delays for whatever reason happen. But what we usually just advise our newborn screeners to do the test at the right time process it call your courier company or the filter cuts brought to the nearest courier company or arrange some kind of pickup and then eventually it will make it's way to our laboratory. When we see the results and when we see the test then we will have to operate it appropriately if it's been more than 14 days the good news is that when there's a delay in the testing or delay in the processing these kids are already meaning they go straight to the follow-up people and the follow-up people will give appropriate advice to the center or to the parent on how to go about repeating the test. So Dr. Ed, I think that's excellent advice. We're telling our screeners in the audience you really must do the test after 24 hours and then the next responsibility is finding a way that it gets to the lab and I just want to relate to the group that if you're having difficulty you have to contact the department of health because the department of health is our partner and if there's difficulty in bringing the sample to the laboratory then they actually will be a big resource in making it happen. We actually just talking about being able to manage these cases of delays in transit because of the pandemic. Now I'd like to address another question that I have here for Dr. Ed and Dr. Yaya. Have you encountered occasions wherein you've got the wrong information in the card? I'll start with Dr. Yaya. Yes, there are cases when we receive wrong information of the card like for example for the dates of birth and the dates of collection so we'd like to inform the facilities and our healthcare professionals and our partners that some of the ENBS disorders being tested have age-related reference values. So for example for MSMS we have less than seven days and more than seven days cut-offs. So if there is an error in the date of birth and the date of collection that can definitely affect the reputation of results. So results can be elevated for less than seven days but can be normal if a baby is really more than seven days old already. So please also take note of the order of the dates in the filter card. It should be day, month and year. So error in filling this up would provide as an incorrect age of the baby. The birth and the collection may make a lot of difference in the interpretation. What about in the pisayas, Dr. Ed? Do you have encountered cases wherein you've got the wrong result in the cards? In the last 15 years one of the things that are so difficult to control is the proper data encoding into the filter card. It's really funny how the technology has advanced but the way people write has not changed. So it's a recurring theme in our meeting either the data is not there the data is difficult to decipher because the handwriting is terrible or the data is wrong and over the years we have made so many creative moves to try to correct that and the only thing we have been done really is to try to teach our newborn screeners how to write properly, how to write legibly. So I think the basic thing here is that for newborn screeners to understand that what they put in the filter card is crucial and the way they put it in the filter card is crucial as well. Memos after memos have been sent out to please try to write the items legibly do not be in a hurry we would put a top 10 or sometimes when we go to the field when we used to go to the field we would flash out a slide about if we would have a contest what do you think this read because there's so difficult to read but in fact our encoders have been so good with decoding difficult to read handwriting so I think what's very important is are the basic things for newborn screeners to understand, right legibly input as much correct information as you can if you do not know what the information is at or rather than put in something there that will go back to you anyway because if the information is wrong we will call you anyway and we will investigate it anyway so you know you're going to end up spending more time with this particular case but if you get it right the first time you write it down properly if it is something everybody can read then the process will transfer through smoothly so these basic things we've been really trying to correct but you know people's handwriting are all different especially if it's a doctor people write letters differently as well and sometimes when there's too many they also get confused so there have been instances where the wrong filter card was filled out for the wrong baby and that's really difficult to manage and you know what happens is that we send a team to the facility to actually investigate it so perhaps one of the important things is that if you get it right the first time there is less hassle but if it's wrong to start with it's a wrong information and difficult to read difficult to interpret then it sort of comes back to you and there will be more time you're going to spend because people from your work you will be coming in talk to the supervisor people from your work you will be coming in to visit and there will be more time on something that could have been done easier and something that could have taken less time and so that's one of the struggles I get of newborn screening trying to smoothen out everything to make it more efficient wow that's interesting writing legibly is very important but you're talking to the right audience now facilities newborn screening coordinates to be listening to us now there are there's so much we have learned actually from both of you and we're actually devoting another episode just on issues that affect actually the results but for today can I have some final words from both of you I'll start with Dr. Ed any final words Maan thank you for this opportunity to talk to our newborn screener and to discuss some very important issues with regards to at this episode anyway processing and getting things right I think the final word here is rather simple get it right the first time if you get it right the first time you'll work less there'll be less trouble in the end will be less trouble for everybody including you and the laboratory so getting it right the first time is crucial as the first initial good step to our good newborn screening and also to get the job done right means you'll be spending less time efficiency increases when we get data correct and we get everything correct the first time and we are training we know that there's a lot of changes in the system people are being reassigned to a lot of other places especially with COVID but we are building and we are increasing our online courses to teach our newborn screener is how to get things right Thank you Dr. Ed any final words First Maan thank you for this opportunity and for being invited in this episode well as part of the NBS program we should all be aware of the different factors affecting newborn screening results so the newborn screening center and the laboratory are relying only on the information that you give us that you wrote on the filter card and so we must ensure that all fields are completely filled up with the correct information because this will be the basis of the laboratory for releasing results and giving correct instructions and recommendations Thank you Dr. Yaye Remember that in collecting this sample it is important to completely provide all information asked on the filter card do not miss a single bit of information this data are all important in the interpretation of results and are critical for the immediate recall of patients who have positive results in screening again as mentioned in this episode write legibly completely and adequately Thank you very much to our guest today Dr. Yaye Elizaga and Dr. Ed Pazuchon In this episode we have learned that certain scenarios and factors do affect the results of the newborn screening false positivity and false negativity may happen depending on the situation Data collected are important in the interpretation of the results and are critical for the immediate recall of patients who have positive results in the screening There are different factors that can occur that may require repeat sample collection for newborn screening to have accurate results To our virtual audience please send us your comments questions or list of topics that you want us to cover in our succeeding episodes Email us at info at newbornscreening.ph or you may tweet us at newbornscreening.ph and also include the hashtag hashtag ENBSPH Before we end I want to take this opportunity to present to you 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 you should use it to claim shop vouchers with our partners If you have already downloaded the app answer the quiz and we will send to your inbox to earn those points We continue to improve our services as deemed necessary by the emerging challenges to 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 the frontliners improve connectivity with newborn screening coordinators and most importantly provide unparalleled service to every family For our next episode we will continue to discuss other factors affecting ENBS this time focusing on prematurity low birth weight and other neonatal factors This and more here in newborn screening in focus 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