And these children are more prone to spina bifida or neural tube defect. We also know that theres an increased risk of congenital Heart Disease and occasionally an increased risk of kidney abnormalities. Concentrate at her school in essex, seven year old beau attends special pe classes to improve her motor skills and her ability to interact with others. Try to keep your arm straight good girl. Thats enough, perfect. Ive never worked with a child with foetal valproate syndrome before. Beau finds a lot of things challenging. Shes actually got a diagnosis of adhd. She also, we feel, has got problems with her Co Ordination so thats being looked into in terms of possible dyspraxia. Can you try with your other hand and your other foot . At school, beau needs special, different treatment to the other kids. But at home she is just one of Three Sisters all struggling with health problems, caused by foetal valproate syndrome. I dont know if it was like denial, but ijust i didnt when when you see your children every day you dont see them as being different theyre just your children and for someone to say theres something wrong with your child, you think, no, theyre fine, theyre. Theyre perfect but obviously there is issues and obviously they need they need extra help. You know its hard. Their eldest daughter, 16 year old devon needs to be constantly watched over. She suffers from reflex syncope, a condition which can restrict blood supply to the brain. I think im a bit slower than other children. Im slower in, like, writing than others. I get extra time when i do exams because it takes me like a long time to understand what the question means. Devons younger sister, 11 year old sienna is the sibling most affected by the syndrome, leaving her with mental and physical impairments. It affects me. I get really stressed out. I either startjust making lots of noises, or ijust start screaming, screaming or crying because it is then just too much for me. She has accidents, its not every single night she has an accident but there is some kind of leakage every day. Shes got this condition because of the medication i was taking whilst i was pregnant with her. Shes incontinent and she soils as well. This is something that will go on with her for the rest of her life. As a remedy for her epilepsy, leanne has always been prescribed sodium valproate. Yet both she and her husband say they were never fully warned that taking the drug whilst pregnant could damage their children. We wasnt told, no way, shape or form that this would happen to us. There was no guidelines. There was no information, there was nothing. This is a drug that was prescribed from a doctor and this is what happened. We are the ones living with the consequences. Since the anti epilepsy drug was launched in the 19605 under various brand names, its estimated that tens of thousands of women around the world have taken it during their pregnancies, unaware of the dangers. Karen is one of them. I didnt think my child was going to be like how she is today. If i had known when bridgit was inside me, if i had known now what i knew back then, i wouldnt have had my child. Emma and janet also took sodium valproate during their pregnancies. They say there were not aware of any warnings and were given no indication of the danger by their doctors. He didnt even tell me to an effect that i had epilepsy to start with. When i got my first prescription there was no warning in the boxes at that point, i mean we are talking 83, 84, so there was nothing for me at all. My husband and i questioned the midwives, questioned neurologists and to just be told take this medicine, its the best to control your seizures thats great to control the seizures but the baby. After their children were born with disabilities, they set up a charity to raise awareness. We started our National Campaign in 2013 and the main aim was to get warnings on to the boxes, on the patient information leaflets. Partly as a result of theircampaign in 2016, the medicines and Health Care Products Regulatory Agency recommended that warning labels should be featured on all valproate containing medicines. Gps must only prescribe the drug to women of child bearing age as a last option, after explaining all the risks. But why has it taken 50 years to get the warning out . In the uk, the government regulates what information is provided to patients, and according to emma and janet, it knew about the dangers of the drug as far back as 1973. They discovered the evidence deep in the national archives. There you go. That a statement, that a statement similar to that proposed by ici could be included on all relevant data sheets but not on packaging inserts, so there would be no danger of the patients themselves seeing it. If they hadnt of made this decision. You would have been warned. Id have been warned and probably the boys wouldnt have been harmed like they were. The 20,000 affected. There wouldnt be that today. It is an extraordinary scandal. Since the very start of its licensing in this country, there was knowledge of risk and yet a decision to hide that risk from mothers, a totally sort of paternalistic idea that mothers might worry about it. Well, of course, mothers have the right to know. In a statement, the medicines and Health Care Products Regulatory Agency said at the time, according to clinical practice it was for the doctor to decide how much information a patient was given about their medicine. Since then the need for patients to be fully informed has been underpinned by legislation. But Charities Say the system of warning patients is proving ineffective. Over the last year, hundreds of babies around the world have been born with sodium valproate syndrome. Many pharmacists and Health Centres are still issuing the drug in generic packaging with no warnings. We are now here in 2018 and the scenario is that woman are still given white boxes in which there are no warnings there is absolutely nothing on them. The fact that women are still not being made fully aware of the risks is particularly alarming because amongst affected families there is growing fear that foetal valproate syndrome is actually being passed on, through the genes, from one generation to the next. Three generations of the same family. Here today in liverpool are grandma, two grown up daughters and their kids. Foetal valproate syndrome has dominated their lives. Its because i took that medication thats why my kids havent got a normal life and they struggle every single day of their life to fit in and do things. One of my kids have tried to. Couldnt cope and tried to hang themselves. Sue took the drug epilim throughout her pregnancies. She only discovered it had harmed her children after a doctor visited her at home. Despite their difficulties, sues daughters now have children of their own. In the past, natalie was prescribed sodium valproate to control her epilepsy. Theres certain things that they are doing, like their behavioural ways, the way they speaking. Its just certain things. Im like, i remember doing things like that when i was a kid. My little boy is nine. Hes got dyspraxia, learning difficulties, a bowel condition, sensory issues, memory problems. Whilst researching this film, we spoke to several families who suspect that sodium valproate is somehowjust not harming their children but their grandchildren too. Until now, those suspicions have not been deemed credible but weve obtained the results of a major scientific project in south korea which actually supports the idea that the drug can harm successive generations. Chan young shin, a professor of pharmacology, is leading the research that uses pregnant mice, injected with the compound. What does your research actually prove . The experiment indicates that sodium valproate can travel through dna and afflict successive generations with Mental Health problems. In the uk, the findings are being carefully considered by the government and have already triggered concern amongst experts on foetal valproate syndrome. Dr Rebecca Bromley is a leading neuroscientist and she believes the need for more research in this area is urgent. That was the first bit of evidence that had in any species that potentially might be carried on to the next generation. Before this paper came out we just didnt know. We had no evidence that it was going to be an issue and we were still learning about the longer term effects on the individual who had been exposed directly to the drug. This is something now that needs to be looked at it as quickly as possible to give the families some reassurance. The consequences are incalculable. How extraordinarily distressing this must be for the families affected. The knowledge that this is now in within the dna of that family and potentially transferable from generation to generation. At home in liverpool, tanya and natasha want to get their children formally diagnosed but like many families they are struggling to find a doctor who even knows the syndrome exists. I went to the doctors the other day and i asked my doctor a question and i said can you tell me is there a possibility this could be a part of my facs . My gp turned round and said, sorry, what is facs . I was like, i have to keep repeating myself and i should not have to do that. I said, i should not have to be your teacher and i walked out of the room. I thought, that is not my place to explain to you what facs is. Read my notes. Couples that have come to see me in the south west of england, some have really struggled to get their gp to refer them, i know that for a fact. Just stand down next to mum and we will try and measure your head. It partly depends on really the first hurdle if you like, whether their Family Doctor or gp has some knowledge or awareness of the condition at all. Back in london, bridgit is becoming weaker the drugs are no longer working. Her brain is brain damaged so she has only one part of her brain that works and the doctor have turned round and said now, a neurologist doctor has turned around and said they cant give her any more medication no more. She has different kinds of seizures and now she could die any day. I love you karen says bridgit isnt expected to survive beyond a few more months and insists that when that fatal moment comes, she is not to be resuscitated; she is to be rest in peace. No one will bring her back alive thats what these letters say on this door. Rest in peace knowing that every day i see my little girl having a seizure in so much pain as i do thats more painful to watch than seeing my little girl probably go from me and be at peace. Today, tanya and natasha are heading to liverpools Walton Health centre they want to get their children assessed for foetal valproate syndrome. Im a little bit anxious to know what is going to happen, what hes going to say. Ijust think we need to know whether these have got the syndrome, because if these have got it and we havent took the medication, if these have got it, is it going to get passed on to their children . Is it going to stay in the family for as long as the family carries on . Id like to try this next one for me, please. Neuropsychologist, professor gus baker is the lead author of the most comprehensive Research Programme ever conducted into children born to mothers with epilepsy. Weve actually looked at the children from birth and followed them up over a six year period, assessing their development, their Neuro Development, in terms of how well their brains are working, their development of their language, their memory and their intellect. So talk us through the assessment, what are you going to do today, exactly . What i want to be looking at is how this young boy is developing. The first one is really straightforward. Can you write your name for me . Ill be trying to get an overall picture of how he is developing in relation to, for example, how his peers are developing. Can you draw me a house . How many bedrooms has it got upstairs . Two bedrooms. And i drew some flowers, some leaves, a gate and a path. So, i know you cannot give us a definitive diagnosis, but what are your thoughts after that assessment . Well, obviously, it is going to take me a little while to score up the test results but when i have done that, ill be looking at his strengths and weaknesses and ill be identifying them and trying to map them on to what we understand about sodium valproate and how it affects children and then ill probably be in a good position to provide a formulation of what i think has happened to him and what we might be able to do to ameliorate those difficulties that he is clearly having. Even though it could be years before the full extent to which her grandchildren are affected is known, sue believes, the drug she first took nearly four decades ago has caused infinite damage to her families lineage. I do think my grandchildren have been affected by it. I have had my worries with my kids growing up. Ive got the worry again with my grandkids. How long is it going to go on for . Its not fair, not fair at all. Its so wrong. So many peoples lives have been affected and ruined. The trans generational impact of foetal valproate syndrome could potentially remain with families for centuries and as the first generation of children to be born with the condition mature into adults, there is growing demand that the government should pay for their care and support. In france, a charity led campaign for compensation is being supported by the government. The government decided to create a special fund to help victims. There is a fund that is organising all the expertise, to appoint the doctors and pay the doctors and who are going to say who will have to pay. Until now, a campaign in the uk for compensation to help affected children has failed to receive any government backing. But recently the department of health has initiated a conversation with charities and key mps who have been fighting for a public inquiry. We are in a good dialogue, the minister, lord 0shaughnessy appears to have taken this very seriously, is willing to engage with us. He appears to be completely conscious of the need to stop this scandal continuing and the need to recognise what is happening in france. Something similar has to happen here and without delay. Unbelievable that the english democracy does not work properly and does not help the people. The people must put pressure on their government for that. Its a rallying call that charities in the uk are championing. Emma and janet are at the forefront of the campaign. The care package is more important because of the trans generational link now. The fact that our grandchildren could be affected, you know with Neuro Development disorders, possible heart malformations, they need care and support. For us, it is a government issue, the government has to take responsibility on that matter and make sure these children are fully looked after. As a parent in particular my two are a lot older now they are in their 20s and its a worrying factor for me, im not always going to be here to take care of the kids and to live an independent life is going to be really, really difficult for them. Janets two grown up sons, both of whom suffer with the syndrome, are completely dependent and still live at home. Philip is more seriously affected. Im 25 now and symptoms are i cant concentrate for long, when i go outside my social interaction is zero and i am very apprehensive with going anywhere, really. Both of janets sons have suffered with neurological problems since birth and two years ago doctors discovered that philip, like many maturing sufferers of foetal valproate syndrome, had developed yet another condition. After i have finished my College Course that i had been on for eight years; i was diagnosed with epilepsy, stress related epilepsy. It is really hard for me, its really hard for me. Its hard for me to describe the symptoms but i know its really difficult to live with. I think it is disgusting the way the government are acting. I think they should pay compensation to all these babies that have grown up now into young adults that are struggling. Any kind of apology or compensation might come too late to help children like bridgit. It breaks my heart. I picked this plot because it is a lovely cemetery. I didnt want to choose a cemetery yet but because of how my daughter is deteriorating so rapidly, i needed to do it because i wont be able to do it once she does pass away. Mothers shouldnt have to bury their daughter. No mother should do that. My family are mourning now and will be the day i lose my little girl. It is going to be a roller coaster ride over the week ahead, and you will see what i mean when we take a look in more detail at the outlook. Friday, though, was the coldest day of the past few days, but we had sunshine and most places were fine and dry. Things turned mild this weekend. Atlantic wind strengthening and mild aircomes weekend. Atlantic wind strengthening and mild air comes in behind this weather front, which is and mild air comes in behind this weatherfront, which is driven by deep low pressure heading close to iceland. Here is the rain, heavy rainfora iceland. Here is the rain, heavy rain for a while in the morning across Western Hills through the afternoon of rain, becoming light and patchy, keeping cloud for most of england and wales. More likely to see the sunshine in scotland and Northern Ireland, accompanied by showers, windy as well. A blustery day, but mild, temperatures higher than friday. The deep area of low pressure could bring severe gales across the far north of scotland overnight, before the wind eases down. Then we have the returning frontal system making a beeline for scotland, where we see outbreaks of rain and drizzle. Many areas looked like being dry on sunday, quite cloudy as well. Breezy out there, but mild, temperatures high on sunday, even with the cloud. If you get sunshine where we have shelter from the high ground, such as cheshire, north east wales, 15. That will be the best it gets. Things are changing on monday, because the weather front bringing the rain across the north is going to edge its way southwards. The weather will change across northern parts of the uk, dry conditions follow in. Ahead of it, strong and gusty wind. The rain arriving across southern england later in the day. The highest temperatures there, things cooling down a touch. The weather front bringing the rain is sitting to the south of the uk probably by tuesday. The High Pressure means a chilly night ahead. However, the weather fronts are coming back in from the atlantic, never clearing away. It could be a chilly start, bright with sunshine, in eastern areas. But the rain comes back in from the south west. It can be quite heavy rain for a while. Things are moving quickly, wind is picking up, the rain russias eastwards to the near continent, and we get sunshine following behind and showers. A range of two bridges, five in glasgow, ten in london. Later into the week, low pressure sitting very close to the uk. The rain having pushed through, we keep the shower was going and a chilly wind as well. With the low pressure and the wind direction, we are drawing down colder air. This is where we get a roller coaster. You can see the fluctuation in temperatures goes across to the other side of the atlantic. The fluctuation will propagate across the atlantic into the uk. It is due to the position of the uk. It is due to the position of the jet stream, the winds moving their way northwards and southwards. For the surfaced wind, what we feel, we change from northerly to a south westerly and back to a northerly, as the pattern moves across the atlantic. Where we have northerly wind all south westerly wind meaning more cloud and a chance of rain, but also much milder. Goodbye. Tonight at ten, President Trump stands by his America First policies for trade but insists the us is still open for business. He told his audience of International Finance leaders that a booming us would benefit everyone. America first does not mean america alone. When the United States grows, so does the world. But a blow tonight to America First us proposals for massive new tariffs on imported bombardier planes part made in belfast are blocked. If the vote had gone the other way, it would have been devastating. It would have been devastating for the 4000 directly employed workers, for the 20,000 in the supply chain, and for the Northern Ireland economy. Well be looking at the implications for bombardiers belfast factory
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