 Welcome to Kalusuganay Karapatan. Good day to our viewers. Good day, Dr. Manchit. In this episode of KK, we will focus on babies. We will answer the question, us babies, very young as they are, do they have the right to health and what are these rights? Is there a law that protects babies and give them the right to a good life and health? Dr. Manchit. Of course, babies have rights, Dr. Lily. And today we will discuss these rights. But before we start, let me greet our viewers a very pleasant day and welcome to Kalusuganay Karapatan. Indeed, our topic for today concerns babies or newborns and their right to health, particularly newborn screening. Yes, it is good to tell our viewers the nature and scope of newborn screening. Well, there are many kinds of newborn screening and our viewers are probably familiar with the newborn screening wherein you get a few drops of blood from the heel of the baby. That has been going on for 20 years now and we have a law that actually mandates that every baby must have newborn screening. But newborn screening is not limited to taking blood from the heel of the baby and today we will discuss the other forms of newborn screening. In particular, we will be talking about vision screening and hearing screening. Both expected to be done at the newborn stage of life. So I did my research about these conditions and found out that vision screening is an efficient and cost-effective method to identify children with visual impairment or eye conditions that are likely to lead vision, that would likely lead to vision loss. And if so, there is a need to refer them to an appropriate eye care professional for further evaluation and treatment. Meanwhile, the other test is hearing screening which should be done before a newborn is brought home from the hospital. And Dr. Lili, did you know that although most babies can hear normally, one to three of every 1,000 babies are born with some degree of hearing loss. Without newborn hearing screening, it is difficult to detect hearing loss in the first months and years of your baby's life. And about half of the children with hearing loss have no risk factors for it. And since our program talks about Kalusuganay Karapatan, early intervention means the right of every baby to avail of programs and services that help with hearing loss and learning important communication skills. Very interesting. We really are very excited about the topic today and it's best that we hear it from the experts. So I would like to introduce them. Let me start with an ophthalmologist from the Philippine General Hospital and director of the Philippine Eye Research Institute, National Institutes of Health, Yuppie Manila, Dr. Leo Kabilian. Dr. Kabilian, welcome. Thank you, Dr. Menchit and thank you, Dr. Lili, for inviting us. And to arrive is Dr. Charlotte Chong, an MD-PhD, an otolaryngologist. I had the next surgeon from the Philippine General Hospital and director of the Philippine Newborn Hearing Reference Center of the National Institutes of Health, Yuppie Manila. It's a pleasure to be here, Dr. Menchit and Dr. Lili. Good morning and good morning to the viewers. Good day to all our resource persons at the outset. Let us thank them for grazing our program. May I shoot the first question to Dr. Leo? Dr. Leo, can you tell us what your office is doing regarding vision screening? For screening the newborn babies. We are focusing on the premature babies. We need to screen them to avoid blindness among these babies. When you say premature, can you tell the viewers what age of the baby is? What when you say premature, what would be the age of the baby by that time? So the World Health Organization defines premature are those babies less than 37 weeks of age. So what we're saying is that from 37 to 40, they're called term babies and anything before that is actually premature. But you said that you are particularly interested in newborns who are actually delivered when they are only 32 weeks of age. Yes, because when they are delivered less than or equal to 32 weeks of age, they can have an eye condition called retinopathy of prematurity that can cause blindness in some patients. So actually a premature baby has many problems to start with. It's not just the vision. So we'd like to remind the viewers that once a baby is premature, the baby really must be delivered in the hospital because the baby may have difficulty in breathing, may have difficulty in feeding, but now we're hearing from Dr. Leo that there is one more thing that we have to look at and this time, that's the vision. Dr. Leo, can you give us some statistics? How many premature births are there in the Philippines? So in the Philippines, we have around 2 million births per year of which 350,000 are premature. These are the babies less than 37 weeks of age. Of the 350,000 premature babies, 50,000 are less than 32 weeks of age. And the significance now of your program when you say that you're looking at specifically 32 weeks, what is the connection now with your vision screening? Patients, babies that are born in less than 32 weeks of age can have abnormal development in their blood vessels of their retina. So with this, we need to check these patients to see if they have abnormality that we can intervene early to prevent blindness. So for our viewers, can you just describe the parts of the eye when you said the retina, which part of the eye are you referring to? So if you compare the eye to that of the camera, the lenses are the one in front of the eye. We have the cornea and the lens. And then the film of the camera is actually a retina. That's the back of your eye. The retina, it has blood vessels. And these blood vessels are needed for the retina to function. So what is, when you say the premature, you're concerned about retina of the premature, what happens at that time, at about 32 weeks? Because when a child is inside the womb, when it's growing, on the third month of development of age, third month inside the womb of the mother, they start developing the blood vessels of the retina. Now this continues to develop until birth. So when you are born prematurely, this development stops. Or it stops or it's delayed. And it can cause abnormal proliferation of blood vessels. Because it has stopped. And these abnormal blood vessels can leak and can cause retinal detachment, causing blindness to the eye of the baby. But you say and this cannot be picked up by the physician, the pediatrician at the intensive care unit? Yes, it's difficult to pick up because the changes happens during the first few months of life. And at birth, their eye could look normal. So they look normal except that later on, because of the abnormality in blood vessels, then they become blind and cannot see. So what's important is to detect them early. So is this a, considering the advancement in healthcare in the Philippines right now, is this something that's routinely done on all premature babies right now? Doctor mentioned it's good that you mention about advancement in healthcare. Although of course it's good that there's an advancement in healthcare. But because of that, premature babies are surviving. Now because these premature babies are surviving, then they would have, more of them would develop the retinopathy of prematureity, which we need to detect. So that means technology has its advantages and disadvantages. And you mentioned that because of improved technology, these premature babies are surviving now and they now suffer the consequences of retinopathy of prematureity. Yes. In fact, the Philippine Eye Research Institute in collaboration with University of the Philippines Manila in collaboration with the World Health Organization. We looked at the different blind children in school. And for example, among all the blind children in Philippine blind schools, 20 to 48% who are blind are because of the retinopathy of prematureity. Yes. You mean to say they were not diagnosed earlier? So it is preventive in nature? If they are diagnosed earlier, they can be treated. There's a treatment to reduce the number of babies who will eventually become blind. Dr. Leo, when you say they're diagnosed earlier, what do you mean by that? What are the signs and symptoms that one would tell my baby should be seen by an ophthalmologist? So what is recommended is that we screen this premature babies when number one, when they are less than or equal 32 weeks of age. Then second or because sometimes if they are not yet there's a problem in determining the age of the babies or if they are less than 1,500 grams. So those are the two criteria. Less than 32 weeks of age or less than 1,500 grams. It is recommended that they are referred to eye care professionals who will screen the babies. And screening is really just put medicine on the eye to dilate the pupil using an indirect ophthalmoscope. It's a gadget they put in the eye with a viewing scope and a lens. They can view the retina of the babies. And if it's abnormal then some of these babies might require treatment, laser treatment as an example. So you're with the Philippine Eye Research Institute and as a research institute I'm very certain that you are on top of the situation regarding statistics and domesticity. How endemic is this situation in the Philippines? Is this a public health problem? Yes. So as I mentioned out of the 350,000 premature babies 50,000 are less than 32 weeks of age. So when we look at our statistics here only less than 50% are actually screened or examined. Yes. And these less than 32 weeks premature babies we expect 10% to have retinopathy of prematurity. And of this 10%, 10% of which will have eye complications if not treated which can lead to blindness. So how much of the primary healthcare approaches being done by UP Manila, NIH in the context of health promotion, health education telling the public that you have to have your child examined. So right now the Philippine Eye Research Institute of UP Manila the National Institutes of Health and University of the Philippines Manila is collaborating with the Department of Health as well as the different professional organizations and the World Health Organization so that to increase awareness of the screening and because in premature babies less than 32 weeks of age are actually they need to be in a neonatal intensive care unit. So the campaign is for the neonatal intensive care unit to promote screening for retinopathy of prematurity as well as the pediatrician and neonatologist. So they would encourage or refer patients to be screened if they belong to less than 32 weeks and less than or less than 500 grams. So Dr. Leho early is when you say they should be screened and tested for these young babies. That's a very good question, Dr. Menchit. We recommend the recommendation and also it's an international recommendation that they be screened on the 20th day of life or before they are discharged from the neonatal intensive care unit. And how early is treatment? Treatment, depending on the stage it can be treated during in the next depending on the stage of the disease it can be treated as soon as when it's discovered. So how many stages are there, Dr. Leho? There are several stages from the mild stage 1 to a severe stage 4 disease where treatment is really recommended. For the mild cases then sometimes they are just the ophthalmologist or the eye care professional will just observe. And so they are screened on the 20th day of life and another examination on the 6th week of life. And treatment as you said is at what stage? Around stage 3 to stage 4. And does it stop when you screen and if when you give the treatment it actually aborts the progression of the problem? Yes, more than 50% of patients that are treated would be saved and they will not become blind. Okay, so from Bulag, we go to Bingi. What about hearing screening? May we hear from Dr. Chong, our expert today? How is it performed? Well actually when a baby is born there is already a possibility to do what you call autoacoustic emission testing or automated ABR testing. These are the two newborn hearing screening tests that can be done in order to delineate whether a baby has some form of hearing impairment. Now OAE or autoacoustic work by which if you give a sound to that ear with a very, very small microphone you are able to induce dancing of the hair cells or movement of the hair cells. And the dancing or the movement of the hair cells will emit some form of energy that can be detected by a sensitive microphone that can take out the energy from the echo. So that's what you call a cochlear echo. So if detected the presence of a cochlear echo will mean that the baby is able to hear the tone that was given. In the same way, automated ABR works the same way but it also tests the higher center for hearing. So aside from just being able to delineate the response of the hair cells within the inner ear or the cochlea with AABR you are able to detect the response from the brain stem itself. So if you are able to delineate a waveform by giving a small tone at the ear an AABR means it is passed and therefore the child is able to hear. If you are not going to do OEE or AABR it's very difficult to know whether the child is really able to hear normally. However, having said that we used to test babies by just being able to give loud sounds and in fact in areas in the Philippines where you don't have the machine or the OEE machine or equipment or the AABR equipment we've been able to validate a community based type of hearing screening test for newborns and that is called the BAH test. So when the child is there and sleeping after feeding you say BAH and you are able to see whether the child is blinking or there is a starter reflex and if you are able to see that then you know that the baby is probably able to hear loud sounds. If the baby does not get started by a very loud sound like a BAH test then that baby according to the law should be brought to the nearest newborn hearing screening center that has the facility to do what you call the objective tests using auto acoustic mission or AABR. So if it is a law it tells us something that it is mandatory. It's mandatory? Yes. And if it is mandatory I wonder whether we do have services offered by the government for every baby to be screened and to be given such opportunity to be screened. Can you say something about the law? Yes ma'am. Republic Act 9709 or the Universal Newborn Hearing Screening and Early Intervention Act of 2009 was actually signed by then President Gloria Macapagalaroyo in August of 2009. It took about a year before the Philippine National Institute worked with the Department of Health to come up with implementing rules and regulations. And it was then Secretary Esperanza Cabral who actually approved the IRR for this law. This was signed June 28th of 2010. It took another one or two years before we can craft the manual of operations for the implementation of the law and this was finally approved by the Department of Health and distributed as a circular to all the Department of Health centers for implementation and that was in 2013. We did a pilot study to see whether what we crafted as manual of operations and implementing guidelines could be done properly and in 2014 we came up with the results of the pilot study. Basically in the pilot study what we found is that yes OE and AABR can be done. We can provide the training for certified newborn hearing screening centers. We can actually certify personnel so it's actually the newborn hearing screening reference center one of the centers at the National Institute of Health in UP Manila that's overseeing both the certification of all the personnel who will perform the screening the certification of the centers under the DOH as well as being able to maintain the quality and standards for the testing. We are also maintaining a national newborn hearing screening registry database and this is where we can actually submit their data so that we can use the data for policy formulation and also for program development. Doctor Shailot talk about newborn and I think timing let's tell our viewers when do you want this to be done. According to the law a newborn should be tested within the first three days of life or before discharge from the hospital. At that we do know that not all facilities or hospitals will have the equipment in that regard the law allows for the newborn to be tested within the first 30 days or one month of life and therefore if the baby is born outside hospital facilities in lying in centers there's still a possibility to do the autoacoustic emission or AABR testing even at one week of age second week, third week to fourth week of age because we do have an algorithm we call it one, three and six meaning to say you have to be able to perform the newborn hearing screening within one month of age we need to be able to diagnose and confirm the presence of hearing loss using more sophisticated testing within the next three months of age and you should be able to put an amplification device by the age of six months for every hearing impaired child why is this because it's been shown that early intervention can actually produce the best outcomes even for a hearing impaired child if you are not able to do this the delay in speech and language as well as the the defect in communication skills can actually have a very deleterious effect not only for the individual but also for the family and even for society at the National Institute of Health with the Institute of Health policy the Philippine National Institute did a lot of cost analysis and with the cost analysis we were able to number one prove that universal newborn hearing screening is better than targeted if you will only test the babies whom you suspect to have hearing loss because of defects in the head and neck area or because there's been there's been antibiotic administration or because the child is premature or the child was actually admitted to the NICU then you would miss out on 50% of the babies who actually may have hearing impairment but do not have risk factors So Dr. Kusyalot can you give us a numbers you've been screening for some time now among the babies who were screened did you find to be of need of additional hearing devices Can you add also on the what is the social economic profile of your patients that have been diagnosed to have hearing loss Well actually for the first question what is the prevalence of newborn hearing impairment or congenital hearing loss we had a community based population based study in Bulacan which is my home province and this was a study that was funded by the US NIH that looked at outcomes of fetuses when mothers are actually exposed to environmental toxins the most common environmental toxin that was noted in this study was propoxur which is the one that's used in insecticides turns out that those who had exposure to propoxur actually had already some changes in the propagation of the stimulation when the baby is able to hear something So this exposure of the mother exposure of the mother to agricultural propoxur can actually cause some changes already in the hearing pathway now of that study it's been noted that it's about 1.4 will have hearing profound or severe bilateral permanent sensory neural hearing loss that translates ma'am to around 8 profoundly deaf Filipino babies being born every day or one deaf baby being born every 3 hours and that's only severe to profound I just have a follow up question about exposure but in the general population right now based on the data that you have gathered because not all mothers know that they've been exposed can you give us the figures just an ordinary population of let's say 50,000-100,000 how many would have problems with hearing we can say that about 8% will have problems with hearing over all ages but we think that probably about 30% of these will probably be in children there of course are a lot of hearing impaired elderly individuals also in the Philippines as well as those who have been deaf because of infection especially for the babies that we found at the UPPGH for example we had for the first 100 patients we noted that 30% of them were deaf because of congenital rubella congenital rubella girls of reproductive age were not given booster vaccinations against rubella so that when they became pregnant later on their babies would contract the virus and be born with congenital rubella there will be an additional 20% who will be deaf because of infections and when we talk about infections we are saying that infections from otitis media, viral or bacterial chronic otitis media and also some form of viral infections that can affect the nerves there would also be some form of congenital defects of the inner ear and that would comprise around 4% there would be deafness also because of meningitis or infection in the brain and that's about 4% as well so overall 50% of the most common causes of deafness can be considered preventable so there are risk factors therefore if these are preventable can you briefly enumerate these risk factors aside from of course a very sensitive thing about exposure to propoxor spraying I'm sure a lot of companies would not be very happy hearing that and they can argue with you on the basis of the direct cost effect but having said that what other risk factors can they learn from us about this hearing problem number one, I think that families should be aware that girls of reproductive age should have booster vaccination of rubella against rubella second is in Pilipino is this tigdas okay, tigdas hangin German missiles the second is that there's still a myth among the population and we found this out in the indigenous people of the southern Duzon that ang luga ay kasama sa paglaki ng bata meaning to say discharge from the ear is part of the life of a child and this is a myth it should not be that people will just take for granted the fact that there is ear discharge among the children because when you have ear discharge that means that there's middle ear infection we found that about 12% of our cases may be deafened also because of middle ear infection having said that we also have special population in the Philippines that might be predisposed to otitis media because of some form of genetic disorders and our contribution to world literature is the fact that the institute of human genetics working with the Philippine National Ear Institute and our collaborator from the University of Colorado found a very specific gene that can actually predispose children to having otitis media at early age in this population 50% of the population had otitis media and that's because they had this AM2L1 gene mutation that will hamper the production of an inhibitor to the bacterial product when there's infection because the reason why they are not able to mount the defense against infection of the middle ear and this can cause of course hearing loss I mean you know I think we've realized that when you talk about deafness now there's so many causes and hearing it from Dr. Leyo and Dr. Charlotte the care of the mother when she is pregnant is actually very important I'd like to pursue the question Dr. Lilly about the socioeconomic status this is something that's more common among the poor or is it something that's present in both classes of society I think when we look at the profile of our patients we would see that very commonly they come from the middle class of course the socioeconomic conditions for those with infections would be higher but for congenital deafness per se we are not seeing that solely coming from the poor sectors in fact we also have babies coming from the middle income socioeconomic strata having this and these are people who are employed and they have small families they are quite educated and yet they have babies who are born deaf because they missed out on the preventive aspect of not being aware that there's actually a vaccination that can protect a pregnant mother from this congenital rubella for example there's also a propensity to give antibiotics for those with neonatal sepsis of course we cannot prevent this but people will just have to be aware that when your child has been admitted in the NICU for example and given this very autotoxic antibiotics like the aminoglycosides that child should be submitted for some form of newborn hearing screening so that you don't have to wait for the age three or four before you bring the child for diagnosis of hearing loss in fact at the PGH ear unit we noted that the average age by which we are getting referrals from the pediatricians from the family physicians regarding detection of hearing loss would be at around age of three years so this is quite late if you look at the 136 algorithm because there's a certain age by which speech and language we no longer develop and that's about age of six to seven so after that even if you put a very powerful hearing aid or even a cochlear implant which is the ultimate type of treatment for severe to profound deafness the child will no longer be expected to be able to speak normally however if you are able to do the hearing aid fitting at an early age and within the next 12 months you are able to establish that the child is not able to benefit from the hearing aid that child should undergo cochlear implantation and that's the ultimate surgical treatment for severe to profound deafness so i mean it's interesting because you're advocating for screening in the first three days of life and in the case of vision screening we were talking about test at about 20 days so timing is actually a very crucial for both hearing and vision screening the other thing i've noticed is that you've pushed for legislation because you wanted to cover all babies and that's why now it's covered by if i feel health i do want to throw the question out to Dr. Leo i know that you said that you're focused because you wanted to address basically the hospitals do you think it's an easier job now just focusing it on the neonatal units as compared to the test of Dr. Chong who wants to reach out to every baby in the population yes, population screening is really challenging in the case of retinopathy of prematurity it's easier because the target population is confined these are babies less than 32 weeks of age who are in the neonatal intensive care unit so we are working with the DOH to to issue an administrative order it has to be urgent it has to be now right so i think you know the role of government has to be emphasized the research being done by our faculty at the national institutes of health is only one step but government has to come in to make sure it becomes a policy and then the rest of the children in the country actually can avail of this may i ask Dr. Leo do you also have this community based screening just like Dr. Sherlock how much of community based is really giving us a true picture of this deafness at the level of the community for eye screening the community screening happens actually at the age of 5 or 6 when they are kindergarten and we when we examine these children in school we have seen that around 10% so 4 out of 40 pupils in a classroom would have eye condition mainly actually error of refraction but one of four would have ambiopia or lazy eye that's the situation in school so it's a part of routine screening right now is it a policy that's what is already it's a we are working with the senate and the congress with the DOH as well as the department of education to make it a vision screening law so it's it was in the previous congress up to a second or third reading but now we are working on the first reading so hopefully it will be passed with this current congress so for both Dr. Leo and Dr. Charlotte what do you want to tell the Filipino people about blindness and deafness in the context of a very very important population group the babies the future of the country what can you tell the Filipino people about blindness and deafness deafness so thank you for blindness that will affect premature babies we know that when a child is blind at least two persons would be needed to take care of this child and there's a loss of opportunity for this child as well as the caregivers so we need to prevent blindness among these children so for those who are premature we are urging the doctors and the parents to refer patients babies less than 20 weeks of age or less than 1500 grams to be screened for retinopathy or prematurity on the 20th day of life or before they leave the hospital let's repeat that 30 less than or equal to 32 weeks less than 32 weeks or 1500 grams doctor shallot for babies regarding newborn hearing screening we'd like to inform the public that this is already a law that mothers should demand that their babies be given newborn hearing screening if they say that the facility is not equipped then by law they should send you or refer you to the nearest newborn hearing screening facility certified by the government by the DOH in so doing you are able to assure that you are able to detect hearing loss if present in your baby because if you wait for two years and three years of age that will be too late already and therefore the government now is also working not only in providing the funding because PHIC feel help pays for the newborn hearing screening as part of the newborn package at the PGH by August we will start what you call the PHIC funded diagnostic as well as speech therapy services so once the pilot study is done that should be also available to the children with hearing impairment and later on even cochlear implantation will also soon be covered so there is hope for babies who are born deaf it's just that as parents or families we should advocate for the right of every child to a healthy ear and hearing health we are learning a lot today doctor lily being a pediatrician is very important to learn new things for the babies and at this point just one line message from both doctor leo and doctor chong mas maaga mas maige perfect doctor leo premature babies ay kailangan mas screen for retinopathy of prematurity so doctor lily i think next time we will talk about the other forms of screening what is important to remember is that we all have to look at the newborn as a helpless person and to say that they have rights we actually have to take care of them while the mother is pregnant and as soon as they are born we have to ensure that for all kinds of screen that are available in the country on that note prevention is always a lot better than cure we prevent blindness we prevent deafness we protect the rights of the babies Pilipinos we must realize that we are always protected but we need to comply with the various realities of life we have to be educated to especially must continue their endeavors and the advocacy of educating the public improve our health information and communication system thank you very much to our, to our guests I want to thank you for continuing continuing research to improve our knowledge about vision screening and hearing screening ladies and gentlemen I hope this episode is giving you guidance and the Filipino public in general information on the rights of babies and how their future may be insured with newborn screening remember you have the right to know your rights you as citizens of the Philippines are entitled to better care and health the highest standard possible that the government should offer to its citizens but we have to end this episode we'd like to thank everybody our guests and our viewers for staying with us until the next time we'll see you at Kalasugad Ay Karapatan