In this very special September International Awareness Day episode, Kurt is joined by Dr Kenneth Lyons Jones and Dr Christina Chambers. Dr Jones chats about his identification of Fetal Alcohol Spectrum Disorder, or FAS as it was first termed back in 1970. Dr Chambers chats about recent medical discoveries that are likely to make the process of FASD diagnosis significantly easier. They both talk about attitudes towards FASD and knowledge about this disability in the community as a whole – and also the need to improve the standard of medical knowledge when it comes to both FASD prevention and supporting people with this invisible disability.
For more information about FASD, please go to: https://www.nofasd.org.au/
Prenatal alcohol exposure can be determined from baby teeth: Proof of concept
Early Predictors of FASD in Ukraine
Early Predictors of FASD in Ukraine – Christina Chambers (grantome.com)
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewee: Dr Kenneth Lyons Jones and Dr Christina Chambers
The copyright is owned by NOFASD Australia.
All rights reserved – No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia. The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.
Dr. Kenneth Lyons Jones is a world-renowned paediatrician, dysmorphologist, teratologist and researcher in the field of birth defects. He is a Distinguished Professor and Chief of the Division of Dysmorphology and Teratology in the Department of Paediatrics, School of Medicine at the University of California San Diego. Dr. Jones is actively involved in research, clinical services, training and education, and policy focused on the clinical delineation, diagnosis and prevention of adverse pregnancy outcomes and birth defects resulting from environmental exposures. He is also founder and medical director of “Mother To Baby” California, a teratogen information service that provides women and clinicians individualised assessments regarding the safety of exposures in pregnancy and lactation.
Since first describing Fetal Alcohol Syndrome in 1973 with David W. Smith, M.D., Dr. Jones has made extensive contributions to the prevention, improved diagnosis, and treatment of fetal alcohol spectrum disorders (FASD) through his research efforts and clinical care. He has trained physicians from all over the world in the diagnosis of FASDs and has organized FASD evaluation programs worldwide. Currently, he is head of the Dysmorphology Research Resource, which is part of the larger National Institute on Alcohol Abuse and Alcoholism consortium studying this disorder.
Dr. Jones has authored over 250 publications in scientific journals and is the author of Smith’s Recognizable Patterns of Human Malformation, now in its 7th edition. Dr. Jones is a former president of the Western Society for Paediatric Research, the Teratology Society, and the Organization of Teratology Information Specialists and is currently a member of the Association of American Physicians. Research Professor, School of Global Public Health, University of North Carolina.
Director of Clinical Research for the Department of Paediatrics at UCSD and Rady Children’s Hospital. She is a perinatal epidemiologist whose research is focused on environmental exposures and pregnancy and child health outcomes, including birth defects. She co-directs the Centre for the Promotion of Maternal Health and Infant Development in the Department of Paediatrics at UCSD and is the Program Director of “Mother To Baby” California – a telephone-based service providing individualised risk assessments for pregnant women and their providers in the State of California. Her international clinical research projects are focused on addressing medication and vaccine safety in pregnancy as well as FASD, and involve studies focused on prevention and intervention in Ukraine, Russia and South Africa, with collaborations in Australia and Poland.
Kurt Lewis (00:00):
Welcome, welcome, ladies and gentlemen, to this very special episode of “Pregnancy and Alcohol: The Surprising Reality”. My name is Kurt Lewis, your friendly neighborhood podcaster. And today I’m interviewing a pair of amazing guests. That’s right, ladies and gentlemen, usually I interview one guest per interview. Today I’m interviewing two magnificent guests.
Today I’m joined by a pair of world-renowned medical experts and NOFASD international ambassadors. One is considered the father of fetal alcohol syndrome of FAS, as he was one of the two doctors at the University of Washington who first identified FAS in the United States in 1973. The other is a perinatal epidemiologist whose research is focused on environmental exposures and pregnancy and child health outcomes, including birth defects. I have the pleasure, absolute pleasure of introducing Dr. Kenneth Lyons Jones and Dr. Christina Chambers. How’s it going, both of you?
Dr Christina Chambers (01:05):
Dr Kenneth Lyons Jones (01:06):
That’s going well with me. Thank you, Kurt.
Kurt Lewis (01:10):
That introduction wasn’t too loud for you guys? That was-
Dr Kenneth Lyons Jones (01:12):
Particularly after that introduction.
Dr Christina Chambers (01:15):
Not too loud at all.
Kurt Lewis (01:17):
So, I like to start off my interviews with a nice, easy kind of question. And I’m particularly curious about this one, because I always like to ask medical experts what led them on this journey of discovery and research and what led them to wanting to be a medical expert, because it is kind of like a calling in the end of the day. I’d like to ask you both, starting with you, Christina, what led you to your medical studies, particularly your focus on Fetal Alcohol Spectrum Disorder?
Dr Christina Chambers (01:45):
For me, it was kind of serendipitous that I started actually as a volunteer, working at what was then called the California Teratogen Information Service. So, a service that my colleague here, Ken Jones, started many years ago, providing information to pregnant and breastfeeding women about various exposures in pregnancy.
Dr Christina Chambers (02:04):
And as part of that volunteer experience, I got to learn about all different kinds of things that a person might be concerned about that we didn’t have information on in terms of whether it was safe or not safe. Everything from household chemicals, to medications, to substances like alcohol and how we learn about what those things may, or may not, do. And so that really sparked my interest in entering into this field. And I had the opportunity to be able to work with the best in the field and lucky enough to be able to continue to my education and to enter into doing research in this area.
Kurt Lewis (02:41):
What drew you particularly to the research portion of the thing over something more practical? I mean, not that what you do is not practical, but you’re not exactly on the front line, per se.
Dr Christina Chambers (02:53):
Dr Kenneth Lyons Jones (02:54):
Yes, she is actually.
Dr Christina Chambers (02:57):
What drew me to it was the fact that there – and it’s an eye opener for a lot of people -that there are so many things, exposures that occur in pregnancy, that some are intentional, some are unintentional that we really don’t know enough about. And so, it was like, why don’t we? This is a huge gap and it affects … everybody is born to somebody, so it affects the entire population. And here are these huge gaps in our knowledge that we have the opportunity to try to address. And my curiosity and the fact that it is possible to do this research and come up with answers, that’s what drew me to it.
Dr Kenneth Lyons Jones (03:33):
Tina, actually, her first paper was on the effects of Prozac on the developing fetus, a drug which is so commonly used for depression. And yet, we knew nothing about it at that point. And she spearheaded a study to look at that, that was published in a really fantastic medical journal. And that really was the beginning.
Kurt Lewis (03:55):
That’s incredible. Hidden harms, really. It’s amazing what we don’t know about – and that it can affect pregnancy. As much as I’ve been interviewing people, experts, medical experts, it constantly amazes me what we don’t think about, the hidden harm.
Dr Kenneth Lyons Jones (04:10):
Kurt Lewis (04:11):
So Ken, the same question I asked Christina, what led you into medical studies and led you into making your somewhat famous paper on FAS?
Dr Kenneth Lyons Jones (04:22):
What led me into it was the person that I did my fellowship with David Smith, who was a Professor of Pediatrics at the University of Washington in Seattle. And I met him early on in my residency. And then I decided I wanted to do a fellowship with him after I finished my paediatric residency. And I did do a fellowship with him. And relatively soon after I began my fellowship, we were able to see eight children down in a hospital in Seattle that had put together for us to see – or for Dr. Smith to see – I sort of had a hold of his coat tails at that point.
Dr Kenneth Lyons Jones (05:00):
And we saw these eight children, all of whom had been born to alcoholic women. And four of them had this very specific pattern of malformation that became known as the Fetal Alcohol Syndrome. So, it was a very serendipitous type of thing. And as you can probably imagine, nobody listened to us at that point. Nobody believed that alcohol caused a problem to the unborn baby, but it really has taken off. And pretty much the medical profession is pretty aware of the fact now, that in fact, this is a real disorder.
Kurt Lewis (05:34):
I find that insane that people didn’t listen to you back then, literally, because this is about children we’re talking about, why wouldn’t you want to listen to that? Why would you deny that fact?
Dr Kenneth Lyons Jones (05:44):
Well, it was felt that women had been drinking alcohol for centuries and nobody had ever suggested in any way that prenatal alcohol could cause a problem to the developing fetus. And that was the initial reaction. But as it turned out, when we started looking, we discovered that people had been talking about this for centuries and centuries, it’s even written about in the Bible. It’s not called the Fetal Alcohol Spectrum Disorder, but it’s written about in the Bible. And it was known in ancient Carthage that you didn’t drink wine on your wedding night in order that defective children would not be conceived. And that was even before the Old Testament was written.
Dr Kenneth Lyons Jones (06:29):
And there are suggestions in a lot of non-fiction about the effects of alcohol on the developing baby. So, it’s been known about for quite a long time. It’s just that people really had forgotten about it in modern times, that had not considered it as a problem. And when the first time I talked about this at a national meeting, the minute I stopped talking, I can assure you, I was scared to death because all over the auditorium, people rose their hand. And there was not a one that didn’t feel that this was due to a viral infection during the pregnancy or something else because this couldn’t be due to alcohol.
Kurt Lewis (07:07):
I can’t imagine that. Honestly, I can’t. Professor Jones, it’s the 50th anniversary of your publication of your article, your original article about FASD or FAS, as you called it then. Did you ever think your research would have such a lasting impact and still be discussed today? We’re still discussing it, this podcast is discussing it right now, ironically.
Dr Kenneth Lyons Jones (07:31):
No, I really did not think that it would have as much of an impact as it definitely has had. As we continue talking today, I’ll tell you some stories about that. But no, I really had no idea of the impact that this was going to have. As a matter of fact, I will tell you, after we saw those eight children, four of whom had this very specific pattern of defects, we got into Dr. Smith’s car to go back to his office at the university hospital. And he looked at me and said, “Ken, what do you think of that?” And I said, “Not much, Dave, what do you think?” And he said, “Ken, I think that this is clearly the most important thing that I’ve ever seen. And I suspect it will be the most important thing you’ve ever seen as well.” And of course, he was right. I really initially didn’t think that this would have anywhere near the impact that it’s had today.
Kurt Lewis (08:24):
Wow. That’s very prophetic. Sorry, as in terms of he had a lot of foresight.
Dr Kenneth Lyons Jones (08:31):
He had a lot of foresight.
Kurt Lewis (08:35):
That’s amazing. So, Dr. Chambers, I’ll go to you, if that’s okay. You recently have been studying early predictors of FASD, particularly biological markers for screening pregnant women and infants for signs of FASD in pregnancy. Could you explain more about this research to the listeners? How close are we to these biological markers being able to be used in the wider medical community and how would this improve the FASD diagnosis process?
Dr Christina Chambers (09:05):
Yes. So, Kurt, as you probably know, one of the biggest challenges in this field is the stigma that’s associated with alcohol consumption in pregnancy and with kids who have FASD. And so, it represents a challenge because there hasn’t been a tried and true way of being able to do a test, a genetic test or whatever to say that this child is affected. And for the mom, haven’t been clear cut biomarkers that either tell us that the mom had consumed so much alcohol in a certain period of gestation, or more importantly, that this child is likely to be affected.
Dr Christina Chambers (09:43):
So that’s been kind of the holy grail, both from the standpoint of being able to identify kids as early as possible that may be or likely to be affected so that early intervention can be implemented sooner, and better outcomes achieved for those kids. But also, to know as early as possible, the mom who might benefit from intervention to try to help reduce alcohol consumption for that and for future pregnancies. And so those two, not mutually exclusive, but important goals.
Dr Christina Chambers (10:12):
So, what we’ve been working on the past several years with colleagues at Texas A&M and at British Columbia and at Emory University, is trying to come up with a panel of biomarkers that will help us get closer to those objectives. And one of them, two actually, that we’ve been working on in pregnancy are looking at two markers, one that’s called micro-RNA. So, these little, tiny, active elements that can be measured in the bloodstream, in plasma of moms during pregnancy, and there are hundreds of them, but they maybe occur … be up-regulated or down-regulated in pregnancy. And we’re looking to see whether certain patterns of expression of these biomarkers, not only are associated with pregnancies where the mom reports more alcohol use, but most importantly, are they associated with saying, this is a child that when that child is seen a year, two years, three years later is definitely affected?
Dr Christina Chambers (11:09):
And we have identified a panel of about 11 of these micro-RNAs that seems to do a pretty good job, even when gathered from the mom in the second trimester of saying, this is a child that’s likely to be affected. That’s huge. It’s certainly not ready for clinical practice, it needs to have much more validation in different populations, at different levels of alcohol, and so on. But promising, both from the standpoint of saying, here’s a child that should be targeted for early intervention. Here’s a mom who could be potentially helped to reduce her drinking. But also, from the standpoint of trying to understand what underlying mechanisms are contributing to this. Why are these micro-RNAs over expressed and can we devise a treatment? Is there something that you could do during pregnancy that might reduce or ameliorate the effects of the alcohol?
Dr Christina Chambers (12:00):
Along the same lines with colleagues in British Columbia, we’ve been looking at markers of inflammation. So, we know that alcohol is pro-inflammatory, and that inflammatory profile and pregnancy may be related to adverse outcomes of pregnancy. And we do see that there are different inflammation profiles in moms who have consumed moderate to heavy amounts of alcohol, but importantly, different inflammation profiles in those moms who go on to have a child who is affected.
Dr Christina Chambers (12:27):
And then after the child’s born, and this is obviously so common that the first time the pediatrician, Ken, sees a child, nobody’s ever talked to the mom about alcohol, nobody knows that she drank, but he sees a child either with a biological mom or in foster care or adoptive situation and you’re trying to say, is this child affected? If the child has physical features, then it’s easier to say that. But if the child doesn’t and the majority, as you know, of kids with FASD may not have any physical features, just are going to go on to have neurodevelopmental adverse outcomes associated with the alcohol, what is it that we can do to identify those kids early on for early intervention?
Dr Christina Chambers (13:06):
And so, working with colleagues at Emory, we’ve been testing something called the cardiac orienting response. And it’s a really simple test that you can do in kids as young as four to six months of age. And what it is, is just showing the child a picture, so a visual stimulus, and they also get a test using an auditory stimulus, so they hear a sound. And then once that stimulus is presented, you look at what happens to the child’s heart rate. So just like listening to your pulse, you’re looking at the heart rate of the child and, kind of counterintuitively for me, what happens is that when a child sees a new stimulus or hears a new stimulus, their heart rate goes down. So, it goes down because they’re pushing oxygen towards the brain to be able to respond to this new stimulus, to try to acclimate to it, and then the heart rate returns to normal.
Dr Christina Chambers (13:56):
But in a child who’s been affected by alcohol, their frontal lobe does not, the part of the brain, does not function normally. And so that heart rate, when that new stimulus is presented, does not go down, doesn’t go down as far as it normally would. And that simple, simple, 20-minute test seems to be able to do pretty well at identifying kids who will go on to demonstrate, diagnostic tests that can’t be done until the children are older, that they are affected. So, if we can know as early as four to six months of age, that this child, we should go do everything we can to enrich their environment, to provide them with all of the things that will improve their outcomes, that that could be a really positive outcome for kids that otherwise might not even be recognised until they’re school age, or if at all.
Kurt Lewis (14:42):
That’s a game changer. Let’s just say, because everything I’ve been told by experts, I’ve interviewed people with FASD, early diagnosis has immense benefits to children. And when you get the right supports in place, that can … it really can help and change a child’s life. I mean, having a test that you could do to four to six months of age, that’s incredible.
Dr Christina Chambers (15:06):
Kurt Lewis (15:06):
Is it currently being in use or is it still being developed?
Dr Christina Chambers (15:09):
Yeah. How it was originally developed by our colleague at Emory, Dr. Julie Cable, is really to kind of differentiate groups. So can we say this group was alcohol exposed and this group wasn’t. What we’re working on now is developing it as an individual test. So, a screening test, granted. It’s not diagnostic, but a screening test, and also, we’re developing it so it can be done cheaply, quickly without very much special training -could be done in the physician’s office in about 15 minutes.
Dr Christina Chambers (15:39):
So, it’s a child sitting in a car seat with an iPad in front of them. They have a little butterfly sensor that’s applied part of their chest. They’re presented with a stimulus on the iPad, the butterfly sensor measures the heart rate. And then 20 minutes later, feedback comes back saying, pass, not pass. And the child who has the abnormal heart rate response meeting a certain cutoff would be the one that you would go on to say, we want to follow this child closely. We want to provide all of the supports that we can.
Dr Christina Chambers (16:10):
And so, we’re at the point of developing that for implementation so that it could be more widely clinically used, but testing all of the processes to make sure that the algorithm works.
Kurt Lewis (16:21):
To have something so simply done, I mean, one of the problems that’s associated with diagnosis of FASD is the experts, having the clinicians on hand who are specialised in FASD to be able to make that kind of diagnosis. And with this, it really helps in that kind of regards, especially I know in Australia we have lots of rural and remote areas where the experts aren’t necessarily there.
Dr Christina Chambers (16:46):
And that’s true throughout the world. The experts are just not there.
Kurt Lewis (16:51):
Ken, what did you think about this research?
Dr Kenneth Lyons Jones (16:52):
I’m blown away by it. I think it’s absolutely fantastic and will mean so much. As you indicated, and obviously Tina indicated, it’s going to mean so much in terms of the potential to identify this disorder more and more, which is a major problem at this point. Major problem.
Kurt Lewis (17:12):
100%. And I couldn’t agree with you more right there. I know that both of you were authors in a recently released research article that found prenatal alcohol exposure can be determined by something simple as baby teeth. This seems to be an exciting research breakthrough that could … Could you tell my listeners more about the findings of this research and it’s real-world application? I don’t know which one of you wants to lead this question.
Dr Kenneth Lyons Jones (17:40):
This is Tina’s thing also, Kurt.
Dr Christina Chambers (17:42):
I think this is really, truly a game changer now, because as Ken can attest to, and you know Kurt, that there are so many children who present with deficits that may be related to alcohol, but there’s no history, that nobody knows whether the mom drank or not. So, it’s really hard in the absence of physical features to say this was truly due to alcohol – this is not the optimum situation for the child.
Dr Christina Chambers (18:06):
And so, this is group at Mount Sinai that has an environmental lab that for years have been doing work to develop using deciduous teeth, so baby teeth, that kids all lose between four and 10 or somewhere around there, which are actually kind of like a tree. So, the tooth itself has layers that sort of can be actually aligned to going back to the end of the first trimester, through postnatal life, until the tooth is shed.
Dr Christina Chambers (18:35):
And so, you can actually go back into those layers of teeth and do assays that will tell you whether that mom was exposed to pesticides during her pregnancy, whether she used opioids, whether she had tobacco exposure. And then postnatally, you can also look at later layers of the tooth and say, was this child breastfed? Was the child exposed to secondhand smoke? So, that kind of longitudinal history represented in that tooth, in the tree rings of the tooth is an incredible look back at what was happening in that child’s environment.
Dr Christina Chambers (19:11):
So, what the person who’s been working on this, Annika Montag, with the group at Mount Sinai with funding from NIAAA is developing an assay in the tooth for alcohol. And they’re starting with kind of the straightforward approach, which is to look at direct biomarkers of alcohol. So, there’s several of those, ethyl glucuronide is one of them, phosphate ethyl ethanol is another one. So, they’re looking at those direct biomarkers, but also knowing the teeth that they’re developing the assay on, we know the child was exposed prenatally, and then we have control teeth that we know the child was not exposed prenatally.
Dr Christina Chambers (19:48):
So, they’re also looking to say, are there other things that can help us identify, distinguish an alcohol-exposed tooth from an unexposed tooth, so that this could actually become a biomarker to identify kids whose deficits are likely due to alcohol?
Dr Christina Chambers (20:03):
And the other important thing about this is so many children who are prenatally exposed to alcohol also have 57 other hits. So, they may also have been exposed to tobacco. They may also be exposed to other illicit drugs. They may be exposed to environmental chemicals. So being able to look at the whole picture of a child and what multiple factors may have contributed to the deficits that they have, by being able to have this 10 year, basically, look back month by month is incredibly powerful in being able to identify what potential causes or mechanisms led to what it is they’re dealing with.
Kurt Lewis (20:42):
That is absolutely incredible, honestly, and I hear about medical breakthroughs all the time, but this is, like you said, it is a game changer, an incredible game changer, because the biggest roadblock … I don’t know if it’s different for other countries, but in Australia, one of the roadblocks people find when they’re trying to get a diagnosis is being able to have the mother state that there was prenatal … she drank while she was pregnant. And there’s a lot of stigma behind that. And I don’t blame the mothers, but it can be a roadblock for getting a diagnosis. And having this, this there, that being able to take a baby tooth and be able to determine that there was alcohol exposure, it’s incredible. It’s blowing my mind.
Dr Christina Chambers (21:25):
Dr Kenneth Lyons Jones (21:25):
There’s absolutely no question that this is true. And of course, the reason for this is because there are interventions out there now, Kurt, that can be used early on to help these kids and to get them on the footing so that they can be supported from an early age and therefore, really develop and have the opportunity to develop into a really well functioning member of our society. Whereas, if these kids do not get that, they don’t get that diagnosis, they don’t get into appropriate intervention programs, it can lead to serious consequences, secondary disabilities, and a lot of problems for those kids. So, things like this, being able to identify this disorder early is incredible.
Kurt Lewis (22:09):
I couldn’t agree more, really. I’ve interviewed a number of people who have FASD, a number of carers as well. And they’ve all agreed to get the supports in place as early as possible, it changes their lives, honestly.
Dr Kenneth Lyons Jones (22:22):
Kurt Lewis (22:23):
It’s hard to go from that until the next question, but I’ll endeavor to do so. Because honestly, that research, it blew my mind because it is such an impediment and it’s … Congratulations on that breakthrough. I’m honestly, I’m looking forward to the day that this kind of testing, especially on baby teeth, becomes very widely available.
Dr Christina Chambers (22:48):
Kurt Lewis (22:49):
I just wanted to ask though, out of curiosity, is there one issue in relation to FASD that you believe is the most important issue for the medical community to address? I’ll start with you Ken, and then I’ll work my way to Christina.
Dr Kenneth Lyons Jones (23:02):
I think there definitely is one issue for the medical profession and that is awareness of this disorder. And I guess it’s more than awareness as I say that, because I think that most doctors are probably aware of the fact that alcohol, when used during pregnancy, can cause problems to the developing fetus, but to have the doctor then take that information and actually ask a woman during her pregnancy, early in her pregnancy or before she has conceived, when she’s considering pregnancy, to actually bring up this issue to her is apparently a very difficult thing for doctors to do.
Dr Kenneth Lyons Jones (23:51):
And what we find is that so frequently, a mother will bring in her child who is having, say, developmental problems. Let’s say the child is now 14 months of age and has not developed any speech. And she’s suddenly becoming concerned about that, and she brings the baby into see the paediatrician and the paediatrician looks at the child and the last thing they are going to consider in 2022 in the United States, the last thing they are going to think to ask the mother is, well, was there any possibility that you used alcohol during pregnancy?
Dr Kenneth Lyons Jones (24:30):
Now, obviously, it’s inappropriate for him or her as a paediatrician or as a general practitioner to say to a mother, “Did you drink during pregnancy?” That’s not going to get appropriate answer. Or, “You didn’t drink during pregnancy, did you?” which is a more common question that is asked, but there are ways to get around it that can elicit a response without really threatening the mother, which as you pointed out, the mother is threatened by a question like that.
Dr Kenneth Lyons Jones (25:01):
But the last thing that the paediatrician or GP is going to ask a mother is whether that mother drank alcohol during the pregnancy. And the result is that the paediatrician does all kinds of other tests, the issue of alcohol never comes up and the child goes on and on and on and on until finally when maybe the child is in the sixth grade or something such as that, somebody will suggest the possibility that this baby might have been exposed to alcohol. And so, I must admit to you that I am relatively pessimistic at this point in terms of the medical profession and their willingness to deal with this issue in an appropriate way.
Dr Kenneth Lyons Jones (25:42):
And this is one of the reasons why things like what Tina is doing is so important because it will identify whether a child was exposed to alcohol during the pregnancy in a very objective way. But at the present time, depending upon an obstetrician to talk to a woman early in her pregnancy or before her pregnancy, to depend upon that obstetrician to ask that mother about her drinking during pregnancy, or a paediatrician to ask a mother about her newborn baby’s drinking … or exposure during pregnancy, I’m very pessimistic that we are going to make it, as far as that’s concerned.
Dr Kenneth Lyons Jones (26:23):
You can’t imagine how many obstetricians when asked by a woman in the United States, is it all right if I drink a glass of wine with dinner at night, say to that mother, absolutely, that’s not going to be of concern at all. Why? It’s hard to know. I think there are a lot of reasons why, but unfortunately it doesn’t happen.
Dr Kenneth Lyons Jones (26:45):
So, this is the thing that I think we are going to have to do, as far as the medical profession is concerned, to get them aware of this disorder, they’re not aware enough about this disorder and concerned enough about this disorder, that they are going to be willing to bring this issue up with a mother.
Dr Kenneth Lyons Jones (27:05):
Now, in the meantime, between now and when we are able to educate people and make them aware of the concern that this leads to. I think that there are other ways that are available to get to this diagnosis and make people aware of it. I think for example, the foster care system is a system that clearly, to use a trite concept, a low hanging fruit, as far as this disorder is concerned. And it has been suggested that 70% of children in the foster care system in the United States have been prenatally exposed to alcohol and have been affected by that alcohol.
Dr Kenneth Lyons Jones (27:49):
So, we need to go after the foster care system, we need to try to focus on the foster care system to identify children with this disorder. So, that’s one major place. The educational system is another major place to pick up kids with this disorder because frequently we find that children with this disorder do relatively well through the first three, four, even five years of age, but they get into preschool at four and five and they start to demonstrate that they are behind other kids. And this is another place where we need to be focused in terms of identifying this condition.
Dr Kenneth Lyons Jones (28:34):
And the final place, which I think is really a critical area is the criminal justice system. We’ve done a study, pilot study here in juvenile hall in San Diego in which we have screened, we had a nurse practitioner screen children for FASD in the San Diego Juvenile Hall and 24% of children in the San Diego Juvenile Hall screened positive for this disorder. So, these are ways at this point, that I think the educational system, the foster care system, the criminal justice system, and there are probably other systems that we can go after, that will be the places to go, to really identify children with this disorder and get them into programs that can help them – because I fear that the medical profession in 2022 is not the place to go.
Kurt Lewis (29:31):
I always get very pessimistic, especially when I hear stories of doctors telling women that it’s okay to drink. That is an incredibly wrong thing to say.
Dr Kenneth Lyons Jones (29:42):
Yeah, it’s just incredibly the wrong thing to say.
Kurt Lewis (29:45):
Yeah. It’s just the worst thing you could say, honestly, in my opinion. I honestly hope it changes. And I have seen a bit of change in this kind of area. It makes me a bit hopeful in this kind of regard. So, if you’re looking pessimistic, then that’s definitely a very bad indictment on the medical system as a whole. Christina, the same question, is there anything you …
Dr Christina Chambers (30:03):
To follow on from what Ken said, I think there’s clearly, we would hope that there would be the clear message to pregnant women not to consume alcohol, but in addition to the stigma, the other thing that we face worldwide, and I’m sure this is true in Australia, is that most pregnancies are unplanned. And so, even though a woman may intend not to drink during pregnancy, if 50% of people don’t know they’re pregnant until they’re six or eight weeks along and 50% of people do drink something, then you’re going to have a high proportion of pregnancies that are still exposed, despite the fact that they know and are committed to not drinking during pregnancy, they just didn’t know they were pregnant.
Dr Christina Chambers (30:42):
And so, I think one of the strategies that we need to emphasize is pregnancy planning and earlier recognition of pregnancy and the whole intervention strategy for women of reproductive age who have the potential to become pregnant, to intervene on people who are drinking in a risky pattern, just in general, to be aware, and to either avoid pregnancy or to stop drinking before they even attempt to becoming pregnant. So, if that, kind of in parallel to trying to reduce the stigma associated with disclosing or discussing the issue at all, might take us in a better direction.
Kurt Lewis (31:20):
100%. I couldn’t agree more. And that is a problem here in Australia in terms of unplanned pregnancies, especially binge drinking is very much a … it’s a culture here in Australia. I don’t know about America, but it’s a very big culture here in Australia. People will often go out and get hammered and that’s considered an average Friday night, as bad as that sounds. And I completely disapprove it, but it just happens.
Kurt Lewis (31:44):
I’m just going to ask you guys my big question, this is the question I ask all my interview guests. The question is, is there more our listeners could be doing as individuals, or we could be doing as a whole society to support people with FASD? And to prevent FASD outcomes? It’s probably a much better question given what we’ve been talking about today. Christina, did you want to take this question first?
Dr Christina Chambers (32:05):
Sure. I think obviously on the prevention side of it, we know that this is completely preventable. However, as Ken said, I think it would be too optimistic to think that we’re going to tell women, you can’t drink, ever. That’s probably not going to happen. So, on the prevention side of it, emphasizing pregnancy planning, being aware that there’s no known safe amount of alcohol or time in pregnancy to consume alcohol. So, thinking ahead, particularly if you drink in a binge pattern about the potential to become pregnant, and if you have that possibility becoming pregnant, don’t drink at all, that, I think, should be emphasised.
Dr Christina Chambers (32:43):
And then secondly, earlier recognition I think is critical, and the early recognition is so important, and as you say, implementing or introducing supports we know improves the outcomes for these kids, but not enough has been done to develop specific interventions that target the kinds of deficits that these kids have.
Dr Christina Chambers (33:02):
So, there should be a whole array of these that are designed for the profile that this child presents with. And not just assume that what works for ADHD and the general population is going to work for kids with FASD.
Dr Christina Chambers (33:16):
And then last, to improve the expertise of psychologists, teachers, paediatricians, social workers, everybody across the spectrum to have this high on their radar, recognising as common as it is. If it’s two to 5% of the US population, that you’re going to be seeing a lot of that in your practice, in your classroom and so on. So, awareness that this does exist and it’s a big issue.
Kurt Lewis (33:42):
Thank you for that. Ken, did you have an answer for this question?
Dr Kenneth Lyons Jones (33:47):
Well, I don’t have an answer, but I have thoughts about it, and I totally agree with everything that Tina said. I’m going to go back to a word that she has used twice now in the last 45 minutes, and that’s stigma. And stigma is, I think, the most devastating issue as far as this disorder is concerned. And it’s an issue that I think will keep us from preventing this disorder, if we don’t do something about it. And it’s ubiquitous, it’s everywhere in our society. And I think there are few things, and I would say, I don’t think there is anything that is stigmatised as much as a woman who is pregnant, who drinks alcohol during her pregnancy. And this is really far more than just my opinion. We’ve done studies on this, and we’ve documented that this is really, it’s an issue that’s incredibly stigmatised. So, we’ve got to do something about this.
Dr Kenneth Lyons Jones (34:46):
Or as I say, I don’t think we’re going to ever prevent this disorder because by virtue of that stigma, women don’t go to the doctor. They don’t go to see an obstetrician because they are afraid that they are going to be called out on drinking alcohol during pregnancy. And therefore, they stay away. And, to not get medical care, prenatal care is devastating. And we know that mothers of babies who have been exposed to alcohol don’t take their babies to doctors and they don’t take their babies to specialists, etcetera, because they fear they are going to be stigmatised so desperately.
Dr Kenneth Lyons Jones (35:23):
So unfortunately, I hesitate to mention this, but there is only one group that stigmatises pregnant woman who drink alcohol more than paediatricians, and that’s obstetricians. And we, as two groups, should stigmatise people less than anybody, and these pregnant women more than, and their children, more than anybody. I’m not meaning to leave out the general public as far as this is concerned because the general public stigmatises pregnant women who drink alcohol incredibly as well.
Dr Kenneth Lyons Jones (35:55):
So, I think that your listeners, the listeners today, if there’s anything that they can really do, they can be aware of this disorder and they could figure out ways to stop stigmatising people who drink alcohol during their pregnancy, and their kids.
Kurt Lewis (36:12):
Those are both incredible answers, guys. I couldn’t agree more about the stigma, especially. It’s caused a lot of pain for a lot of people, and it needs to stop if we’re ever going to move forward. If we’re ever going to prevent FASD as a disorder, I couldn’t agree more. It needs to stop. I’d like to thank you both for coming on the podcast and chatting with me today. It has honestly been a very big highlight of my podcasting career that I got to sit down with both of you to chat about this. Thank you so much.
Dr Kenneth Lyons Jones (36:40):
Thank you for having us, Kurt.
Dr Christina Chambers (36:40):