- Sources :
- read and/or download the full study (free access) Oral hormone pregnancy tests and the risks of congenital malformations: a systematic review and meta-analysis, F1000Research, First published 31 Oct 2018, 7:1725, DOI:10.12688/f1000research.16758.1.
- read and/or download the full study (free access) The Primodos components Norethisterone acetate and Ethinyl estradiol induce developmental abnormalities in zebrafsh embryos, nature, Published 13 Feb 2018, DOI:10.1038/s41598-018-21318-9.
- Testimonials : read some real stories told by the Primodos victims, see the post comment section.
- Commenting : scroll down this page until you reach the header “Have your say! Share your views” and the box “Enter your comment here…“.
Oral hormone pregnancy tests (HPTs), such as Primodos, containing ethinylestradiol and high doses of norethisterone, were given to over a million women from 1958 to 1978, when Primodos was withdrawn from the market because of concerns about possible teratogenicity. We aimed to study the association between maternal exposure to oral HPTs and congenital malformations.
I am fully supportive of this article on the effects of hormone pregnancy tests as it stands. I have no substantive criticism of the content or methods.
Dr David Healy, professor of psychiatry, psychopharmacologist, scientist and author.
We have performed a systematic review and meta-analysis of case-control and cohort studies that included data from pregnant women and were exposed to oral HPTs within the estimated first three months of pregnancy, if compared with a relevant control group. We used random-effects meta-analysis and assessed the quality of each study using the Newcastle–Ottawa Scale for non-randomized studies.
We found 16 case control studies and 10 prospective cohort studies, together including 71 330 women, of whom 4209 were exposed to HPTs.
Exposure to oral HPTs was associated with a 40% increased risk of all congenital malformations: pooled odds ratio (OR) = 1.40 (95% CI 1.18 to 1.66; P<0.0001; I2 = 0%).
Exposure to HPTs was associated with an increased risk of
- congenital heart malformations: pooled OR = 1.89 (95% CI 1.32 to 2.72; P = 0.0006; I2=0%);
- nervous system malformations OR = 2.98 (95% CI 1.32 to 6.76; P = 0.0109 I2 = 78%);
- gastrointestinal malformations, OR = 4.50 (95% CI 0.63 to 32.20; P = 0.13; I2 = 54%);
- musculoskeletal malformations, OR = 2.24 (95% CI 1.23 to 4.08; P= 0.009; I2 = 0%);
- the VACTERL syndrome (Vertebral defects, Anal atresia, Cardiovascular anomalies, Tracheoesophageal fistula, Esophageal atresia, Renal anomalies, and Limb defects), OR = 7.47 (95% CI 2.92 to 19.07; P < 0.0001; I2 = 0%).
This systematic review and meta-analysis shows that use of oral HPTs in pregnancy is associated with increased risks of congenital malformations.
Prof. Henegan’s systematic analyses of epidemiological studies, is a scientific review which members of the Association for children damaged by HPT’s have waited over 45 years for. The findings are incredible and mirror the congenital abnormalities suffered by our members. It is a scandal that this epidemiological study was not commissioned by the Government Health Authorities and we cannot thank Prof. Heneghan and his colleagues enough, for the comprehensive and utterly compelling review.
Assocation for Children Damaged by Hormone Pregnancy Tests, UK
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Send a request to join the group Primodos (The Forgotten Thalidomide) ACDHPT on Facebook.
82 thoughts on “Oral hormone pregnancy tests and the risks of congenital malformations”
As a congenital malformation, I was born with a heart murmur. Recently I studied my scoliosis and discovered that it is due to hidden spina bifida.
Injectable Primodos, Mexico City, 1975.
Thank you for sharing your story, Julia
at 10 weeks pregnant NHS Dr gave me Primodos from a draw ,my son was born with cerebral palsy , scoliosis . This has had devastating affects on my son as he is mentally and physically affected this in turn has affected the whole family .
Thank you for adding your testimonial Pam
In 1970 I was handed Primodos by my GP (not via prescription) to take as a pregnancy test. I did clearly ask that if I was pregnant would the pills harm my unborn baby, and my doctor reassured me that they would not affect the baby at all. In April 1971 I gave birth to my daughter, who we discovered has severe Cerebral Palsy and is mentally handicapped as well. In later years she developed scoliosis of the spine. Ann has bee confined to a wheelchair all her life, has never been able to walk or talk which is obviously heart breaking for her, myself and all her family.
My main question all these years later is WHY was I given Primodos as a pregnancy test when there was a safe and much used alternative. Indeed a week after taking Primodos my doctor sent me to our local hospital for the usual pregnancy test.
And why after all these years are we still having to fight so hard for the Government and Schering to accept responsibility? How many more trials, reports and analysis do they need the proof is there quite clearly, or are they just waiting for all their victims to die so there is no one left to fight!
Good questions, Janice, thanks
You’ve hit the nail on head Janice.
After me being given Primodos in the autumn of 1968, our baby boy died with an enlarged heart in 1969. He lived for 3 and a half weeks.
3 other pregnancies perfectly normal.
I was not given Primodos with these 3 perfectly healthy children.
Finding out about Bayer I check all medication and creams and never never buy knowingly anything produced by them . It fills me with disgust what they Sheerings did.
Christine, I went through exactly the same .I innocently took these 2 pills and endured the heartbreak of a stillborn daughter who had spina bifida and sever brain damage.I had 3 healthy children, now adults, but the one and only time I took Primidos in 1974 my baby was stillborn and In left the hospital with empty arms ?and then had to organise her funeral. 😢
It is so sad Barbara. And also the proof / record ,of me being given the pills has conveniently dissapeared along with the details of my first born . Lost they said at the surgery.
Like a lot of the other victims. XX
At 5 months. Gastro-entroitus and quickly became pale and breathless with obvious heart failure. I was digitalised and given diaretics and improved. I was transferred to the Newcastle general hospital where I was given cardiac cathertirisation. I was an alert happy child with no obvious concerns, my blood pressure was 134/regular. I had an systolic murmur to the heart grade 3/6, maximal at the left sterna edge and radiating into the axille. Their was a soft diastolic murmur to the apex, no cyanosed.
I had a large VSD, mitral regurgitation, and pulmonary hypertension. The catheterisation pulses were very poor and five days after that the consultant removed a blood clot from the Artury. If the circulation in the limb did not improve it could be dealt with when the child is 5 or 6 years old.
Description of the physical and psychological consequences of the birth defects and the impact it has made to the quality of the claimants life.
The main physical and psychological birth defects of my operation was and is my scaring. I will start with the physical side of the birth defects. I had 2 holes in my heart and had a large amount of scaring to the front of my chest. I remember going to school when I was very young and was absolutely petrified to show it to anyone. I had deap vain and dislocated hips as a baby and had to be put into a splint. I had scaring to the top of my left leg where a catheter was inserted and also had a lot of pain their as well as a child. I was fed through a tube as I believe and at one point my head was so swollen, I had to have an injection in the left side to release the fluid. To this day is showing consequencce. Left side of face is slightly bigger than right side.
I remember feeling very uncomfortable to walk as it was so painful. I was born blue in colour and extremely fragile. As a child growing up I was very pail in colour to my skin and very weak. I could not over exert myself, I couldn’t run or do physical activity or join in with the other children because of my heart defect. I got to tired to quickly. I was unable to do Physical Education in my early years of school for obvious reasons, so I had to sit out and do other work which started to make me feel upset, and secluded.
I often wandered why I could not join in, because being so young I didn’t really understand what was wrong with me. The only thing I new was that I got tired a bit more then other kids. As I was growing up, I still had to attend hospital appointments, I remember feeling so scared of going and so tired of going, all I wanted to do was go home. I wanted all the appointments to end. My scar affected me all my my life, I was still afraid to get changed in front of anyone, I was embarrassed all the time, people would ask me “what’s wrong with me”, “why have you got that scar” and I hated it so much. I just feel this whole thing has affected me big time Because I felt I was on my own all the time and couldn’t join in, all throughout my life I have felt different from everyone else. Abnormal. I have not been able to do what I wanted to do in my life because of what happened. I imagined myself being someone important and having a great job and being able to do lots of exercise, I feel as if I have been stopped in my tracks and just have to live with the fact that I can’t.
Does the claimant have mental capacity to deal with their own affairs.
Yes, although I am taking lots of medication at the moment for depression.
I am currently taking
Naproxen. 500mg twice a day for pain for fybromayalgia
Codeine 60mg. 2 four times a day for fybromayalgia
Pregabalin 150 mg twice a day for pain
Lanssoprazole. 15mg gastro-resistant
Paracetamol 500mg. With codeine
Duloxetine. 60mg. Taken for mood and pain
Lactulose. 5ml. Oral solution
Many thanks for sharing your story with so much information, Amanda
Hi I am a 46 year old female who was born with a missing left fore arm. My mother took Primodos in early pregnancy. Not only have I struggled through but I also now have other health problems. I have a curvature of the spine and am constantly in pain and discomfort. I have had great support from friends and family but now my husband has had to give up working to be my full time carer due to my ailing health. My 26 year old son has been wonderful helping me all his life. He soon became aware that his mom was different and that he had to help me. However I have a grandson now and am unable to pick him up or do some things with him that I would really like to. I cannot work because of my health. I have also had to have tennis elbow release surgery on my only said good arm but that is now extremely weak and am unable to lift and carry. This is all due to over use of my arm through compensating for the lack of my other arm. Why has it took so long for this evidence to come out. Why did it take 2 years for the EWG to come up with their conclusion when independent scientists have now found the evidence. Will the government and Bayer actually take responsibility for this. Too many families lives have been ruined and we are still waiting for that acknowledgement. I do hope as a victim of Bayer that we all get the answers now.
I hope so too. Thank you for your testimonial Gaynor.
People can also watch your Feb 2018 “Made In Birmingham” Interview“.
Professor Carl Heneghan’s study is the most important study ever undertaken on the risks of H.P.T.’s and congenital abnormalities.
This is a synopsis of our son’s life until his untimely death a year ago on 6th November 2017 aged 41 years which we 100% believe was a result of foetal impairment by Primodos and which has clearly been identified as an association in Professor Heneghan’s study.
We lived in Mumbles, South Wales and planned to start a family. Suspecting I was pregnant, 2 Primodos tablets were prescribed by our G.P. middle of May 1975 at 5/6 weeks gestation as a pregnancy testing device. I became very sick after taking tablets, so much so thought I was undergoing a miscarriage (G.P. made home visit). At 4 months pregnant under a Consultant Gynaecologist at Morriston Hospital I asked for an Amniocentesis Test after reading an article in a national newspaper on the detrimental effects of Primodos. He turned this down saying, “Committee of Safe Medicines reviewing, will take many months, statistics can be used to prove anything, i.e. 5 women given cabbage, 3 give birth to damaged babies, cabbage will be blamed”!!! Patronising, uneducated and as our son’s blighted life proved, our Consultant was totally wrong!
Darren was born with ptosis of both eyelids, always walked on balls of feet and toes, underwent operations for undescended testicle, clawed toes, plus penile operation.
Worse than all the physical deformities was the brain damage: he was on the Autistic Spectrum, on school special needs register, severely dyslexic, displayed little or no emotional intelligence, as an adult suffered severe mental health problems, made irrational, poor life choices, unemployable, unable to live life without parent/wife/carer keeping him out of trouble and taking care of all his financial affairs.
He lived half a life when alive and his cavalier, foolhardy, impulsive, mistaken over-confidence ultimately cost him his life when as a self employed fisherman he stepped out of the fishing vessel safe zone while the lobster pot fleet was being deployed. His ankle caught in the bight of rope which dragged him overboard where he subsequently drowned. Although his Inquest verdict was Accidental Death, we know he was unable to compute the danger. He had already been warned by his Skipper on previous occasions of this dangerous action.
Darren’s sister was born a year later with no Primodos interference, has the same blood group, she has a similar look and build but whom enjoyed a normal childhood, achieved a first class honours degree and has a very successful career.
You never think your children will pass before you. We miss our son every day even with all his insurmountable problems. The guilt of swallowing Primodos never leaves me.
Question 1: Why was I given Primodos in May 1975 at 6 weeks gestation by my G.P. as a pregnancy testing device when Pregnancy was deleted as an indication in February 1970?
Question 2: Why did the Regulatory Body of the N.H.S. allow this still to be used for pregnancy testing despite the contra-indications or was it about G.P.’s accruing £35 per prescription from the Pharmaceutical Companies?
Question 3: Why have the Government not commissioned this research. Why have the ACDHPT had to prove the drug was harmful when there has never been proof of their safety in pregnancy?
Question 4: Why have we had an Expert Working Group take two years to conclude there is no link to H.P.T.’s when the link has been found by an independent Scientist?
Queston 5: Why when Prof. Vargesson has also found links to congenital abnormalities, has this study been found ‘inconclusive’?
I think you raise very interesting questions Amanda, and thank you very much for sharing your story with such details.
People can find more information related to Neil Vargesson.
This is clearly a hugely important and impactful piece of research. I am a close friend of a family who has recently lost a son, Darren, in tragic circumstances. Since 1991, I have had conversation with his parents about his personal limitations, his inability to self-regulate in thought process and action, his learning limitations and his difference to the rest of the family. All of this has created tension and anxiety over the years. Ultimately, Darren’s inability to heed advice and follow instruction led to his sad demise.
I am not informed about the perceived wisdom of administering this product at the time: however, I am convinced that my friend had no reason to question or doubt the professional who gave it to her. It was after immediate resulting sickness and newspaper information four months later that my friend herself began to question the impact of Primodos. This was the middle of May 1975. Here we are in November 2018 with proof she was correct to question. My friend has had to live her life as a mum with the knowledge that, in taking Primodos, she did not act in the best interest of her unborn son, a burden too great for any mother.
Following this research, several questions remain unanswered:
why has the Government not commissioned the result
why has the ACDHPT had to prove the drug was harmful when there has never been proof of its safety
why have we had an expert working group take two years to conclude there is no link to HPTs when this link has been found by an independent scientist
why, when Prov. Vargesson has found links to congenital abnormalities, has this study been found ‘inconclusive’?
These questions need answers as tiny compensations to the many families, not least of all mine, who have been blighted by the administration of Primodos.
Thank you for adding your thoughts and for raising important questions, Steph
My mum took primodos in the early stages of pregnancy.
I am suffering from numerous abnormalities that I was born with…. on my hands I have 9 fingers in total, 4 fingers which have the ends missing, 2 fingers were joined together that needed to be separated and 1finger removed because it was very deformed (it was alien looking to me). As for my feet, I have 1 slightly normal looking one which has 5 toes, 1 without a nail 1 with a very tiny nail and 1 with a ring round it. The other foot was born with horrific looking toes and now has 1 toe and is a lot smaller than the other one. From a very early age (about 1/2 weeks old) I started to be operated on.
I had so many operations on my hands and foot throughout my childhood, the last one was when I was 15 years old.
since then I have had an enormous cyst (size of a Watermelon) which was found when I was pregnant at my first scan. It was removed when I was 12 weeks pregnant as they said I wouldn’t be able to carry on with my pregnancy, but also a risk of me losing my baby. After a huge operation that was equivalent to an hysterectomy and awful recovery I did keep my baby. I now have been diagnosed with arthritis in many places including my ankle, knee, elbows, hands and wrists my hands and wrists being the worst.
Growing up has been difficult… being at school was awful, I was obviously different to everyone. Doing PE in barefoot, swimming lessons wasn’t nice. Even if I wore socks or plimsolls I would still stand out. I even resulted to wearing a verruca sock in swimming. It’s not nice being stared at or being talked about or pointed at. Being called names.
Still to this day I will stand in front of people with clenched fists so people don’t see my horrible hands and still if I go swimming or are on holiday I will stand with one foot over the other. Buying shoes is very difficult too, I used to have to buy two different sizes, but now go with the bigger size and stuff the end of the other and put insoles in. Pretty shoes and sandals are a no no. People still ask why haven’t you got flip flops on! If only I could!!!
All of these abnormalities which have clearly been identified as an association in Prof. Heneghan’s study.
Thank you for sharing your story, Jane
In 1974 I was given two tablets to test whether or not I was pregnant. My daughter Tamlyn was born on 16th May 1975 and died on 19th May 1975. Some months later (after moving to a different town) the doctor I registered with told me that I should never have been given the tablets as they were known to cause abnormalities to the foetus. If my daughter had lived she would have been mentally and physically disabled.
Thanks for contributing to the conversation on the devastating impacts of Primodos, Linda.
My son was born in 1967 with a congenital heart condition, enlarged heart, holes in the heart and deformed artery causing in sucking on his lungs. He had multiple surgeries and spent years in and out of hospital as a child. He is profoundly deaf and has learning difficulties. Andrew is now 51 and still lives with me. Andrew has had a lot to overcome in his lifetime, schooling has been difficult as wouldn’t take a child at the deaf school with heart a condition the comments were “we cannot take a child in our school that could drop dead” this was featured in the News of the World. He has had to endure Isolation and loneliness all of his life because of his deafness and learning disabilities, this is still very much a factor today. My 1st Marriage broke because of the pressures we had at young age coping with a disabled child and a family trying to support me as I also had a health child 18 months older and needed care for her during long hospital stays. This was A family broken because I trusted my GP as we did in those days never questioned why I was being prescribed a drug called primodos during my 2nd pregnancy. Every part of Andrew childhood medically and otherwise I have had to fight for tooth a nail as in the 1960’s these condition and disabilities doctors knew very little about. Everyone of us effected by this drug with know only too well how this has felt and as our children now age into their 50’s this does not get any easier it is still is a daily battle even now as medical conditions worsen with age. Who will be there for them when we are no longer here?
Sad and very relevant question, indeed. Many thanks for sharing your story and concerns, June.
Primodos – This is the most important study ever undertaken on the risks of HPT’s and congenital abnormalities.
My Son Colin Francis Hindmarch (now deceased) suffered from;
missing left radius
bilateral septal defects of his heart
stenosis of heart valves
These abnormalities can be verified from his post-mortem report at Great Ormond Street Children Hospital (GOSH) We have a copy of GOSH notes in full.
Colin was transferred to GOSH at 18 hours old, where he died aged 5 weeks. In that time he underwent numerous operations and invasive investigations. Much of that time he was on a ventilator and there was only a period of a few days where we were able to hold him.
Those 5 weeks were hell with repetitive and sequential raising of our hopes which were dashed again in sequence. Then for us, just emptiness emotionally drained in a colourless world. This also affected us as we brought up our subsequent children, fearing to get emotionally close to them in case we lost them. We have lived with this for over 50 years. For my husband the mental strain was intolerable as he was in a position of trying to fulfil an almost professional role of supporting me postnatally, dealing with my mental health issues when he himself was grieving for our son.
We have now found that my GP notes have been altered, much of the records are missing. it is recorded that I lived in a town I have never lived in and seen by a GP I have never seen. There is no record of anti-natal care or the birth or death of our son in my GP notes.
Our son was born at Queen Charlottes Hospital, Hammersmith, London. However, despite London City Records stating all patients notes are kept. Queen Charlottes Hospital state there is no record of me our son being there. I have 7 documents that show that I was including Colin’s birth certificate, transfer letter to GOSH and letters from consultants at Queen Charlottes and GOSH
We know there is no genetic link to Colin’s abnormalities as we have a report from Dr Laura Yates of The Centre for Life Newcastle.
In 1968, we were alone in London, no family support as they were 350 miles away, no telephones, no internet, no councilling facilities as they were not available at the time. We were totally alone! Our only support and comfort was from each other.
All of Colin’s abnormalities has clearly been identified as an association in Prof. Heneghan’s study.
Why have the Government not commissioned this research? All the evidence has been there and readily available to the UK Government?
Why have the ACDHPT had to prove this drug was harmful when there has never been any research or proof of its safety in pregnancy? – Precautionary approach (Hypocrites)
Why have we had an Expert Working Group take 2 years to conclude there is no link to HPT’s when the link has been found by an independent Scientist? Indeed was it the remit of the EWG?
Why when Prof. Vargesson has also found links to congenital abnormalities, has this study been found *inconclusive* Was this research dismissed by the Government as part of the continuation of the cover-up regarding Primodos
The tablets I was given were not given on a prescription, my GP took them from a drawer and handed them to me. This was the day before my 22nd birthday. 4 days later my GP referred me to Queen Charlottes maternity hospital, Hammersmith, London but there is no records of this apart from a line on the bottom of a GPs card which says, LMP ——- EDD ——— QC .
We went on to have 4 more children but our experience with Colin affected how we were able to parent them. We were afraid to get emotionally close to them, fearing we would lose them.
We only have 1 photo of our other 4 children together when they were growing up. The eldest was 12 at this time and it was taken without my knowledge. I always felt I couldnt have a photo taken as there was always one missing.
We have lived with this horror for 50 years. In August 2018 we were told that there was no genetic link or cause for Colin’s abnormalities.
We now have 11 grandchildren but we still grieve
for our 1st born
Thank you for adding your story, Ruth. It’s truly heartbreaking to read all the comments and unanswered questions from those like you whose life has been severely affected by the side effects of Primodos.
I was given two Primodos tablets from a drawer when I told my GP I thought I was pregnant. This was around March/April 1970. Troubled pregnancy with intermittent bleeding. My son was born in November with what appeared to be a bunch of grapes on the back of his neck. I was allowed a quick glimpse of him before he was taken away.
I was transferred to a ward where I kept asking to see my son. Every request to see him was ignored. I was taken to see the baby specialist Mr. Haycock who told me my son needed a SMALL operation on his back to close a hole. I was told it would probably result in him having a slight limp when I asked about the dangers of surgery. I agreed and signed on condition that I was allowed to see him BEFORE he was transferred to another hospital for surgery.
After numerous request to see my baby I was told he had already been moved. THEY HAD ALSO CHRISTENED HIM WITHOUT ME BEING THERE!! I discharged myself from hospital in order to travel to see my baby. I was not allowed to pick him up as he was being kept unconscious as they said he had been fitting. No photographs were allowed so I took some cine film which was blurry but at least I had something. He died aged 12 days.
I asked to see the surgeon who had performed the operation and a meeting was arranged. This man told me that my son had been kept unconscious all the time to prevent fitting and WAS NOT FED in all his time there as he would probably have been a CABBAGE had he lived! This is the reason, I believe, why they would not let me stay with him as I would have questioned why he wasn’t being fed. I never held him in my arms.
God bless you my sweet angel Gary Lee xx
What a heartbreaking and terrible story Lynda, thank you for sharing it with us.
Hello I’ve had 4 children in marriage, 3 perfectly healthy except when I was issued with Primidos in in my Doctors surgery in 1974 in Scotland. These 2 pills was handed to me in her surgery when I went to her as I had thought I was pregnant.Shd handed me the box and explained the way they work.I innocently took them.
8 months into the pregnancy, went into early Labour In hospital .I was given an X-ray and told there was serious problems and my baby would most likely die during birth.Although my daughter weighed 7 lbs she had most of her brain missing and Spina Bifida and was still-born.Leaving Hospital with empty arms I then had to organise her funeral.Years later over 40 years of questioning ,and heartbreak did we see the excellent report by Jason Farrel on Sky.Only then did the final piece of the jigsaw fall into place😢 there is no doubt after have 3 healthy children, but a severely damaged baby in 1975, after taking Primidos that this horrific pregnancy test Pills Primidos damaged and killed my still-born baby.
Thank you for sharing your tragic story with us Barbara.
Almost the same thing happened to me.
I was given 2 pills in a box with a green stripe on the box from out of the doctors drawer.
From that moment on , I had a troubled pregnancy and was given an emergency cesearian 3 weeks before he( Darren )should have been born. He was born with an enlarged heart and died almost 4 weeks later. It was a horrible time.
Over the years you never stop searching for the truth of why and consequently blame each other. That was until I saw sky news and the Jason Farrell documentary. It all fell into place and I almost collapsed.It was the missing piece. later I found also that,that part of my medical records were missing .Surprise surprise. He was our 2nd child unfortunately all the details of our fist born went missing as she would have been on the same card.we also had 2 more children (all were normal) and Darren was the only one I was given Primodos Why do they continue to deny everything and distort the study findings.
Christine, many thanks for adding your story to Barbara’s
My daughter was born in August 1971 after I had been given HPTs(twice). We had a traumatic birth, and she remained in hospital for the next 4 months. She was, the doctor wrote, a strange looking infant with a small head and starey eyes! Sarah has severe learning difficulties. She had to be tube fed whilst in hospital because she couldn’t suck and she was diagnosed as having a soft larynx. She had pulmonary stenosis and twice in the early months developed congestive cardiac failure. Sarah was transferred to Brompton chest hospital and then to Evelyna hospital (a branch of Guys hospital)for developmental assessment.She was brought home for Christmas, and when we took her back they allowed her home permanently.We struggled with feeding and at 12months old she weighed 12lbs. She was 6lbs 3ozs at birth. We struggled but we eventually got to the stage where Sarah would eat cereal . It hasn’t been easy for any of the family, but her younger sister and brother and their families are brilliant with her. She is 47 now and is very caring and loves meeting people. She also can be very frustrated and sometimes gets awkward for no apparent reason.But Sarah is Sarah. Sue
Many thanks for sharing your testimonial, Sue
My Mother took 2 Primodos tablets given to her by her GP to confirm her pregnancy in 1970. I was a small baby when I was born.
When I was 2 years old I was diagnosed with profound deafness and cerebral palsy. As a result I use hearing aids and lip read in order to communicate but unfortunately understanding other people is difficult as lip reading is only 20-25% accurate and I have to spend so much time trying to fill in the gaps. This makes socialising very difficult and as a result don’t have many friends. I have difficulty with my mobility and my balance is pretty bad while walking and getting about. I use walking sticks now, I was more mobile when I was younger.
I now also have asthma and vertigo and have been diagnosed with an under active thyroid for which I am on medication.
I feel I have been denied opportunities in life such as a good job and a partner and maybe children.
It appears to me that proper testing of Primodos was not carried out before being used as pregnancy tests and as a result I have been left with severe disabilities that have impacted on my quality of life.
Another terrible story. Thank you for sharing it with us, Kirsteen
Due to the increased risks of Hormone Pregnancy Tests, identified in the most important study ever undertaken by Professor Heneghan of Oxford University, we now know that the use of HPT’s in pregnancy IS associated with increased risks of congenital malformations.
My connection with HPT’s started in 1970 when, as a young expectant mother,I was given 2 tablets by my Doctor who claimed that this was how pregnancy was confirmed. One tablet that evening and the 2nd the day after. If I didn’t bleed, that was confirmation that I was pregnant. The tablets were taken from a drawer in the doctor’s desk. Absolutely no mention of any risk involved!!
My daughter, Kirsteen, was born with cerebral palsy, profoundly deaf, she was diagnosed at the age of 13 with an underactive thyroid gland for which she is on medication and has developed asthma and vertigo. Her mobility is decreasing and she is becoming more dependent on us.
Those 2 tablets denied my daughter all of her opportunities in life before she was even born. She has struggled throughout her life and cannot go out unaccompanied. As a family, we have also been effected as we have had to carry the burden of pain and guilt over her 48 years, unable to have a normal life, all because the Doctor was “too busy” to offer me the already established safe urine test commonly used at the time. The 2 tablets were so much easier and required no input from the GP. Easier for him maybe, but not for my Daughter and my Family. The damage those 2 tablets caused can never be justified especially when we know that it has been identified in Schering documents that they were aware of the “abortive effective” of HPT’s at the time.
I find it totally unbelievable that the Government have not commissioned this research, and that the government have put the onus on the ACDHPT to prove the drug was harmful when there has never been proof of their safety in pregnancy. Also why did the Expert Working Group take 2 years to conclude that there was no link to HPT’s when the link has been found by Independent Scientists and why was Professor Vargesson study that found links to congenital abnormalities been found inconclusive??
Thanks Wilma for adding your detailed and powerful testimonial
I am writing with regard to my daughter Vanessa that has been affected with the hormone pregnancy test. It was prescribed and recommended by my doctor at a very early stage of my pregnancy to take the two tablets because he said, it was early to detect if I was pregnant which I was.
My pregnancy was Normal and so is the delivery, later to find out that she has severe brain damaged. My daughter is now 45 years old it has been a constant struggle to look after her. She will never be able to look after herself our lives has been dedicated to our daughter’s welfare. We are getting older and she getting more demanding. The stress is unbearable. Sir we welcome your finding, we live in hope that one day we will get the answer and justice that we deserve.
I thank you to take the time to read my desperate plight.
Sent from my iPad
Best wishes to you too Jacqueline, and thank you for adding your testimonial
My name is Helen Elkes and my daughter’s name is Rebecca, always known as Beccy. She was born on 7th November 1970 so she is now 47. I had a normal pregnancy and a normal birth. Beccy weighed 8lb 4 oz and appeared a chubby, normal baby.
In 1970 when I thought I was pregnant I went to my doctor in Wrexham N. Wales for confirmation. At the time I was a student, still at college, but living with my parents as my husband had obtained a lecturing job in Stourbridge. Because of these circumstances I needed to know as quickly as possible if I was pregnant. The G.P. explained that the most rapid test involved taking a certain tablet on 2 successive days. If I was not pregnant I would start a period within a few days. If this did not happen then pregnancy was confirmed. The doctor gave me 2 tablets from his desk drawer. The drug was Primodos and my medical record shows that I took the 2 tablets in March 1970.
At first Beccy appeared to develop normally. She did have many screaming sessions but as first time parents we thought this could be normal. She was generally well and healthy. She did have otitis media at around 6 months which necessitated a hospital stay for a few days where she was administered with streptomycin.
When she did not sit up or roll over or crawl at 8-12 months the clinic told me I was a fussy young mother.
Beccy never attended a normal school, she did spend some time in special educational facilities.
Beccy has multiple physical and mental disabilities. She cannot walk or stand, has spinal curvature and is wheelchair bound. Her diagnoses include cerebral palsy and autism. She had an operation on her foot at 7 in an attempt to correct a deformity in her left foot. This has left her with one leg significantly shorter. She has very limited speech, but I believe she understands most of what is said to her – within the context of her limitations. She can become very frustrated and often resorts to prolonged screaming sessions. She will also refuse to eat, accept personal care, or go to bed if the person caring for her is not one of her favourites. Beccy’s father died some 20 years ago and she found his loss very difficult.
Beccy lives in a home with 24 hour care but comes home very frequently although this is becoming more difficult for me to manage as she and I get older. This is very stressful for me as Beccy is still highly dependent on me even though she is in a care home. I am now 72 and becoming less and less able to meet the physical and mental demands. My overarching worry is what will happen to Beccy when I am unable to meet Beccy’s needs.
I have a second daughter born 4 years after Beccy who is thankfully without any handicaps. She is married with 2 healthy children. Her upbringing was greatly affected by Beccy’s conditions – we were and still are a handicapped family.
This statement takes about 4 minutes to read. How can that possibly reflect what a devastating effect Primodos has had on Beccy’s and our family’s lives for the past 47 years. This is just a very brief summary; the reality is far worse.
I am seeking answers to the following by telling Beccy’s story:
Primodos has affected so many families in many different ways. Some lost there babies early in life, some, like mine, have had a lifetime of caring and coping with extreme disability. It is time that the consequences of this terrible drug were admitted.
Many thanks for sharing your personal story with so much detail, Helen, and for raising great questions
In 1967 my daughter was born with radial club hands and dislocated hips, the sockets were not formed correctly. When she was 15 and menstruation hadn’t started we found out that there was no connecting passage from the cervix to the vagina and the uterus was non functioning. I can’t really describe the emotional roller-coaster of her life, from pitying glances to bullying at work but she has been incredibly brave throughout it all. Despite many operations to correct the hips, during her childhood, she will need a hip replacement now she is 50. That may not happen now because restricted mobility has led to weight gain, so now she is an obese person with short arms and all the disability legislation in the world does not change perception. It is with a very heavy heart that I continue to pursue the questions that myself and many have been asking for years and I wish to thank professors Vargesson, Heneghan and Healy as they battle along with Marie Lyons and all other members of ACDHPT, as we continue our battle with Big Pharma, MHRA, WHA, Government and so called EWG. I will not give up until someone somewhere accepts there are unacceptable and devastating consequences to the pursuit of bad science, profit and dishonesty. In 1967 I went to my GP with a urine sample and he fished Primodos out of his desk. A drug with no efficacy, not actually required to test for pregnancy but something that a drug company wished to market and ever since then my daughter has suffered physical and emotional pain, numerous children have suffered the same and some have died. Parents have suffered and for what and why? This whole debacle is beyond criminal and beyond morality, how could this happen after Thalidomide and how many times will it happen again? I will not let this go.
Absolutely, and after the DES tragedy too, that most doctors think it’s a story of the past.
Many thanks for sharing your story Susan
My mother was prescribed and took two Primodos pills during the very early stages of her pregnancy to determine as to whether she was pregnant or not. Unbeknown to her, she was in fact about 9 weeks pregnant with me.
Consequently I was born with a cleft palete, hare lip, my left eye missing, left ear missing, a deformed right ear, deformed gums, no bones in the left side of my face, a partly paralysed throat and scoliosis (a double curvature of the spine). Such was the extent of my injuries I was not expected to survive and if I did then I would at best, be severely physically and mentally disabled. In fact my mother was put under such heavy sedation following my birth that she did not see me for two weeks, during which time my father was given the option of having me taken away at birth and brought back to him and my mother when I was 18 after a succession of operations – if I survived of course. Thankfully in my parents eyes I was their tiny baby girl that they had longed for and loved me just the way I was and decided that it will be they who will bring me up, not strangers in some cold unforgiving institution.
So, the first of a very long succession of operations was when I was a tiny baby at a few months old to repair the cleft palate and hare lip and they continued well into my adulthood. After a lifetime of operations and countless dental procedures I still have a severe speech impairment, wear a bone anchored hearing aid, dental problems, back problems due to the scoliosis and facial deformities. In addition to this, I have had gynaecological problems throughout my teens, which culminated in having a hysterectomy due to ovarian cysts in my forties.
This wasn’t the only time that my parents came into contact with the Primodos drug – my mother was given another two pills to take when she was pregnant with my younger brother but refused to take them as by then she knew how devastating the effects of these pills were.
This is the most important study ever undertaken on the risks of HPT’s and congenital abnormalities and I am grateful to Professors Heneghan, Vargesson and Healy for their support in our battle for justice, but there’s still questions to be addressed:
Thank you Nicolee, for sharing your personal story and asking questions which deserve an answer and must be addressed.
I went to see my GP, early 1973 because I thought I might be pregnant, he opened his draw and took our 2 tablets and told me to take one that evening and one the morning after. It was later stated that I was pregnant. I went through the pregnancy which I was very happy with, had my daughter weighing 61b 13. When she was born she was blue in colour and they told me she was just cold. left the hospital with my new baby, 3 days later, I was rushed back in because I was heomorraging and I had septecemia. The doctor gave me a d and c. A few weeks later my baby became very ill, she was rushed into hospital and they discovered she had an enlarged heart LLV disease, 2 holes in her heart
WENT BACK AND FORTH TO HOPITAL BECAUSE SHE WAS HAVING CATHICTERISATION, SHE WAS PUT ON DIJOXYN, AND LASICS POWDERS. SHE WAS VERY FRAIL AND WEAK AND IT GOT TO THE POINT OF BEING TO RISKY TO OPERATE ON HER. I WAS PUT ON VALIUM BECAUSE I WAS VERY DISTRESSED AND WORRIED MYSELF SICK ABOUT MY BABY. I HAD ALOT OF SLEEPLESS NIGHTS WITH WORRY AND LOST ALOT OF WEIGHT. SHE HAD SURGERY WHICH LASTED 7 HOURS TO TRY TO REPAIR THE DAMAGE, SHE WAS IN INTENSIVE CARE UNIT AND HAD TO HAVE HER LUNGS DRAINED BECAUSE THEY KEPT FILLING UP WITH FLUID, I SLEPT IN THE HOSPITAL WITH MY BABY WHICH WAS AGONY FOR ME BECAUSE I ALSO HAD A 2 YEAR OLD SON AND HAD TO KEEP LEAVING HIM WITH ANYONE THAT WOULD HAVE HIM AND THIS REALLY TRAUMATISED ME IMMENSLY. I COULDNT COPE WITH ANY OF THIS. I CRIED AND SO DID HE EVERY TIME I HAD TO LEAVE HIM. FOLLOW UP CHECK UPS WERE ESSENTIAL THROUGHOUT HER LIFE AND SHE SUFFERED TRAUMATICALLY ASWELL. SHE IS NOW 43 AND HAS FIBROMALGIA AND SUFFERES NERVE PROBLEMS, ALSO HAS A VERY MINOR BLEED ON HER BRAIN DUE TO THROMBOSIS SHE HAD AS A BABY. ONE SIDE OF HER FACE IS SLIGHTLY LARGER THAN THE OTHER. AND IS CONSTANTLY HAVING TREATMENT FROM HER CONSULTANT AND GP. SHE ALSO NEEDS MEDICAL EQUIPMENT IN HER HOUSE TO HELP HER GET AROUND. I AM NOW TAKING ANTI-DEPRESSANTS AND VARIOUS OTHER MEDICATION TO HELP ME COPE WITH EVERY DAY LIFE.
Many thanks for adding your detailed testimonial, Edna
My daughter Louise was born with congenital abnormalities after I took a Hormone Pregnancy Test (HPT) during the early stages of pregnancy. Her disabilities include cerebral palsy, microcephaly, scoliosis, mild spina bifida, mental retardation, growth deficiencies, hearing loss, her right leg 5cm short than her left, her right foot 4 sizes smaller than her left and born without most of her adult teeth. My family have been fighting for justice for over 40 years and this report finally confirms an association. This report is absolutely vital to understanding why my daughter was born the way that she was.
But I want to know why an independent scientist found the link in the evidence when a government-appointed “Expert Working Group” working with the same evidence over two years concluded that there was no link. Why has the onus been on the victims to provide evidence of the harmful effects of HPTs when the drugs company never had to prove that it was safe? Why has another independent study undertaken by Professor Vargesson on zebrafish – which also found links between HPTs and congenital abnormalities – been labelled by the MHRA/CHM as inconclusive, and this in spite of the OEIC guidelines fully supporting the use of zebrafish as an early indication of adverse affects that may transmute to humans?
I hope this report provides enough evidence for the government to finally take action so that, after forty five years of blaming myself, I can lay this to rest and forgive myself.
Thank you for sharing your story Pam, and for asking important questions
My experience with PRIMODOS began on the 10th November 1972 when aged 15, I suspected that I was around 2 months pregnant. I made an appointment to see our family G.P. Dr Alan Oakley-John at 4, Chessel Avenue Bitterne Southampton and on that day I was prescribed 2 tablets of PRIMIDOS. I can remember clearly going to the local chemist and collecting the tablets, they were given to me in a small clear plastic box with two compartments with a sticky label attached advising me to take 1 tablet followed by the 2nd tablet the following day. If they had been given to me in the original packaging/box I would have definitely seen the warning NOT TO BE TAKEN DURING PREGNANCY and would 100% have taken heed of that very clear warning and not taken the tablets. But I followed the instructions and took both tablets. Dr Oakley-John advised me that day that if I did not have a period within one week then I was pregnant.
I did not get a period and it was confirmed I was pregnant and the child was due in June 1973. I began going to ante natal classes and each time I was examined I can remember confusion and puzzlement as to where the baby’s head was, with different nurses and doctors brought in to have a feel. I was advised I needed a stay in hospital so they could keep a close eye on my pregnancy as I was so young. I was 15 scared and totally naive about pregnancy or the way doctors dealt with things.
I was admitted to hospital and given lots of scans and examinations and different tests at NO time was I ever told or informed that there was a problem with my baby. I was in and out of hospital several times during the pregnancy staying weeks at a time. Each time being told it was for the best for me and my baby, I didn’t question it, I was young and naïve but still I wasn’t told of the heartbreak that was coming.
Towards the end of the pregnancy I was fed up with being in hospital just waiting for labour to start so I asked begged and pleaded to be allowed to go home. They reluctantly agreed and it was arranged I would come back on the 4th of June to be induced if labour had not started naturally by then.
I can remember clearly that night of the 3rd of June the night before I was to be admitted. My baby was writhing and kicking and moving around, she did not stop this unusual activity it continued all night and she was still kicking strongly when I was admitted to the maternity unit at Southampton general hospital the next morning, I remember telling the nurse about all this unusual movement when I arrived at the hospital, she joked baby is in a hurry to get out and be born, I remember being reassured by her comment.
I was taken to a room with my now ex husband and was prepared for the birth shaved and given an enema as was the practice those days. As we waited excitedly for the doctor to come and induce the birth we talked about whether the baby would be a boy or a girl, as during the scans I had asked if they could tell the sex of the baby but was always told they couldn’t tell by the scan, again I didn’t question it, I didn’t know any better.
We had been married 3 weeks, I was just turned 16 years old, we were so happy looking forward to family life with our new baby that was still kicking away in my tummy….and then the doctors and nurses all arrived in the room together……The doctor announced he had something very serious to tell us everyone was deathly silent as they Doctor proceeded to tell us that during my hospital stays they had unfortunately discovered that my baby didn’t have a properly formed head it had no skull or any brain and that the baby would die at birth. I can remember my baby still kicking away eager to be born as the words spun round and round in my head, I can remember hearing screaming then realized it was me, I was sobbing and crying saying no no no please no it must be wrong she’s alive and strong feel her kicking in me, feel my tummy please, they tried to calm us down by explaining that baby may be alive now but the pressures of labour would kill the baby off and it would be born dead and even if by some miracle it was born alive it would be a cabbage! We were shell shocked, heartbroken, devastated, and terrified, we went from ecstatic to hell in a few short minutes. The doctor went on to say they were going to induce labour by breaking my waters and then sedate me heavily so I would not have to go through labour or the birth remembering my baby will die. I barely remember the labour and have a vague recollection of keep waking up and being given another injection of sedative in my spine. The baby was born with forceps and I can remember fighting to wake up and seeing the nurse leaving the room with my baby wrapped in a sheet, I begged for her to bring the baby back and let me hold it, but I was ignored. I asked what sex the baby was and they told me it was a little girl born dead. My ex husband and I pleaded to see our daughter and hold her and say goodbye but we were refused they told us her birth defects were too distressing for us to see. We said we didn’t care that she was our baby and we wanted to see her but it was to no avail we were refused the chance to say goodbye.
The following day I was on the ward where all the other mums had there babies with them I was heartbroken and tearful and seeing their joy made it even harder to bear. I asked to be discharged home; the nurses told me the consultant wanted to see me before I was discharged. I went to his office and he said he was very sorry about what happened to my baby, I remember asking him why? Why did this happen to my baby? He said its just natures way, its nothing you did wrong, it just happens sometimes, he advised me to go home and try for another baby after 6/8weeks he reassured me it was just one of those things that won’t happen again. I asked him again if I could see her and again my request was refused.
My daughter was born at full term weighing only 740g and clearly the doctors knew my baby was not forming correctly throughout the pregnancy they had done numerous tests and scans on me and they knew I would have to deliver a child destined to die, WHY WAS I NEVER TOLD?
I have a letter dated 25th June 1973 from M.S. Buckingham Registrar to Mr P.N. Gillibrand who was my gynaecologist at the time; it is addressed to my G.P. Dr Oakley-John. It states that I underwent a surgical induction of labour on 4th June 1973, a diagnosis of ANECEPHALY having been made. It goes on to say labour became established quickly and the child was stillborn. Again I should have been told about my baby’s deformities, I should have been given a choice but no-one, not once not ever, told me what was coming or what may have caused it. The hospital and the doctors knew I had taken PRIMIDOS I feel like my baby’s birth defects were hushed up, just go home and forget about it, well I never have and I never will.
This review is so important not only to myself but to all the families that have been affected by taking two such small innocent looking tablets, we trusted our G.P.s we trusted that any tablets prescribed to us by our doctor was fully tried and tested and safe to take. But this tablet was so very clearly not safe to be taken by pregnant women the warnings were out there but they were ignored. This drug went on to be prescribed in the Philippines as a morning after contraceptive pill, so how could it ever have become an acceptable form of pregnancy test? Bayer/Schering have never accepted or admitted it was wrong to keep this drug on the market after so many doubts about its safety. We need the truth; we need answers, answers we can’t find without the governments help. We have lost children, children that should have been ours to keep, to love, to cherish.
I personally lost my Son aged 36 two years ago, he committed suicide, but the thing that makes my grief easier to bear is I have my memories of him. Because of PRIMIDOS I don’t have any memories of my little Daughter except she was my baby who I never saw, my tiny little cherub who was born without a head all because I trusted the NHS and took those two evil little tablets.
Very tragic story Susan, thank you very much for sharing it with us and for providing us with so much details
I took 2 primodos tablets on may 4 1970 , exactly 8 months and 1day later my son Andrew was born , I was 20 years old my husband was 22 . The life we planned,the life we expected, the life we were entitled too ended that day,January 5th 1971. Andrew was born with microcephalic, epilepsy , and is serverly disabled , he can not speak, he is in nappies, he cannot feed himself, and his sight is impaired. We effectively have a 4 month old baby in a 47 year old man . He has extremely complex needs and can be quite aggressive. The worry that goes with having Andrew is beyond comprehension, my husband has had a break down and is a broken man . We have never had a “Normal “ life , no family holidays or Christmas . Andrew is our only son and we love him dearly but our life would have been so different had I not took those 2 horrific pills.
Another very tragic story. Thank you for sharing it, Susan
Since the publication of Professor Heneghan’s findings, I feel compelled to comment:
My brother was 41 when he died. His life cut short due to his inability to make clear and well-judged decisions. Darren was taken from us cruelly and quickly. His death feels hugely unfair, particularly on his son who is only 11. Darren died on a fishing boat after stepping into the unsafe zone, his body dragged into the sea after his leg was caught up in the lobster pot ropes; he hit his head and drowned. At his inquest, Darren’s death was deemed ‘accidental’, it was anything but.
In truth, it was his life that was most unfair, Darren lived half a life. He did so because my mother was given Primodos by her GP at the impressionable age of 24. She immediately worried about the effects this would have and she was right to. She has been forced to deal with the guilt of that decision for 41 years and this has had a profound impact on the whole family.
Darren presented as ‘different’ very quickly. He did not meet the usual milestones at the usual times and as he grew, his inability to form relationships, to empathise, to take and heed advice, to learn lessons, would become glaringly obvious. This impacted every aspect of his life. He did not have the ability to cope with life or form lasting and meaningful relationships. He could not empathise or ‘see the wood for the trees’.
Everyone who met us both would comment on how similar we were in looks, build and mannerisms, however my mother never took Primodos when pregnant with me. Our lives couldn’t be more different. It is my firm belief that without Primodos, Darren would have lived a completely different life. He would have been able to study, to achieve, to live in society and his recent passing was a direct result of his inability to follow instructions. We live with an ‘Accidental death’ verdict, knowing that the truth is far more complicated, cruel and predetermined.
Following this research, several questions remain unanswered:
These questions need answers as tiny compensations to the many families, not least of all mine, who have been blighted by the administration of Primodos.
Thank you Stacey, for explaining your brother’s story, and for stating important questions that need to be addressed
The tragic effects of Primodos
My Brother in Law was a happy go lucky guy on the surface, who lived a life so full of anecdotes, if you put them on the stage, they wouldn’t be believed. He tragically died at the tender age of 41. His life was jammed packed with incidents, events and interactions that would make anyone blush. Some can be laughed off, most were tragic. Darren was a victim of his mother being prescribed primodos mid- seventies by her GP and he never really stood a chance. Darren was at best fool hardy, at worst dangerous. He never understood the social laws of engagement, other people, or the impact his lack of understanding had on those around him. Darren spent a life time being vulnerable as he would take everything and everyone at face value, never seeing the danger or assessing risk; this eventually killed him.
The family spent a life time trying to understand him, to reach out to him and provide security, only to be met with his inability to cope with life or accept others had a different point of view. This was not his fault, he was wired this way, but his life was hindered and taken by this defect. My wife and her parents need answers, they have had a life time of anxiety and worry they did not ask for or deserve. Darren was deeply loved, we miss him everyday but the grief we all feel is muddied by anger, knowing his death could have been avoided if he was given half a chance in the beginning.
Following this research, several questions remain unanswered:
These questions need answers as tiny compensations to the many families, not least of all mine, who have been blighted by the administration of Primodos.
Thank you Neven, for sharing your brother in Law’s story, and for reminding us about unanswered questions
In 1968 I suffered with a lot of sickness. I went to my doctors and he said I might be pregnant. He gave me two tablets and said they would not harm my baby if I was pregnant, but I would have my period if I wasn’t.
I had a normal pregnancy and in January of 1969 I gave birth to my daughter Lynda Jane. All the seemed well.
She was very sleepy and difficult to feed.
Her skin was a bit mottled and bluish.
In the middle of the night of the second day, a nurse came to tell me that as Lynda was a bit cold, they had taken her to Special Care.
About two hours later, the same nurse came to me and said that she had passed away.
The post mortem showed she had a congenital heat condition and the doctors said they were surprised she was born alive!
In those days, such babies were buried in in-consecrated ground. As I was still in hospital the burial was carried out without myself or my husband being there, or in fact being told where she was buried!
I have recently been to the graveyard and with the help of a local historian we found the very overgrown spot. Our minister from church prayed for her. I only then got closure.
I hope this information will be of use.
Thank you Tina, for sharing your tragic experiences with Primodos
I was given Primodos after missing a period in 1976,with no warnings of any kind.
my doctor told me to take these two pills, which I now know to be primodos, one each night (for two nights) if
The Pills were given to my from my doctors desk drawer, not on a prescription, they were samples!
On my return visit to my doctor he confirmed that I was pregnant with my first child.
My pregnancy continued, in the last few weeks of the pregnancy, I was told that I was expecting triplets. Soon after I delivered my baby Girl (one baby). Everything was quiet! .. I was informed that my daughter was Missing The top of her head and then to be told that part of her brain was also missing. I never ever saw my daughter, she was quickly taken away. I never knew what they did with her to this day I still dont know!
I was never given a birth certificate, or a death certificate either!……WHY NOT! ?
Now I would like some answers from the British Government as to WHY they gave me an unsafe, harmful drug called Primodos!
Professor Vargesson, aso found links to congenital abnormalities!
The evidence shown by professor Carl Heneghans study shows that my babys increased risk was increased by 124% proving that my daughter died with Massive deformaties caused by Primodos
I would like to have a FULL and detailed reply as to WHY the British Government have ignored our Cries and plea”s for help for the last 45 years??
I too hope that we’ll get the answers to your questions Linda. Many thanks for adding your testimonial
Thank you DES Daughter for allowing us to publish our tragic stories
Linda, you are very welcome. I think a blog/website becomes interesting if web visitors find information that is relevant to what they search for, and is also enhanced by real stories of real people. Then, why would I bother blog daily if the blog could not help anyone, and open some eyes, make some noise, reach more of the general public about various health tragedies…
So again, and sincerely, many thanks to you all for sharing your terrible stories with our readers
I was given Primodos by my GP from his doctor’s bag in 1966 and my daughter was born with an extremely complicated heart condition which affects her day to day life. There is an abnormality of the positioning of the heart, this condition is called situs inversus where the heart is positioned in a mirror image of the normal position. This condition is called congenitally corrected transposition of the great arteries. In this condition the heart can be physiologically normal but the position of the pumping chambers is swapped around so that the right ventricle which normally pumps out to the pulmonary artery, pumps instead to the aorta and vice versa for the left ventricle. There is an associated hole between the two pumping chambers called a ventricular septal defect and there is narrowing of the pulmonary valve and the area immediately below the valve. The heart is greatly affected by being enlarged and the condition is further complicated by the fact that all her vital organs are affected as they are all on the opposite side.
The above heart abnormality would seem to be one which has clearly been identified as an association in Prof. Heneghan’s study.
My daughter has had to make very difficult life choices because of her health limitations and associated symptoms, choosing a career working with children, a family of more than one denied to her because of the complexities of her heart condition. Her childhood too was greatly affected as we were informed by the clinicians that she would not reach teenage years so we lived with the constant fear that she would die young. However, due to her tenacity and courage she manages her condition but struggles with breathlessness if she is walking in strong winds and if she has to walk up an incline or climb stairs. I don’t know what the future holds for her or if her health will deteriorate further which is of great concern to me. I can’t help having feelings of guilt for taking a drug which I now know shows an 89% risk of a congenital heart malformation of the foetus and which has had such a devastating affect on her health. I am also dismayed that:
I remain optimistic that this new research will prove once and for all that there IS a link between the ingestion of a HPT in pregnancy and abnormalities and deformities of the foetus and that we will gain closure and the justice our damaged children deserve.
I also hope that all the Primodos victims get the full acknowledgment and full compensation that they rightly deserve. Thank you for sharing your personal experience Marj
I am a close friend of a family whose lives have been greatly impacted since Mum took Primodos whilst pregnant with their first child, Darren, who very sadly died in tragic circumstances a year ago.
I have known Darren since he was a toddler and have seen the huge physical and mental problems he has had to cope with during his life until his untimely death.
I have seen how this has impacted on the rest of the family over the years and particularly his Mum who has had to live with the guilt that she took Primodos and that guilt will never leave her.
My friends need answers to several questions following the research as do many other families.
Di, thank you for explaining Darren’s story, and for asking important questions
This is the most important study ever undertaken on the risks of HPT’s and congenital abnormalities because my family has suffered so much due to my mother being given Primodos with three of her pregnancies.
Lucky for me I am the eldest and my mother was with a different doctor when she fell pregnant with me and was not given Primodos. The next baby miscarried due to the drug. The next pregnancy my sister was born brain damaged, deaf and blind in one eye. The next pregnancy my brother was born with two holes in his heart, damaged aorta, heir lip, cleft palate and hyperspadia.
I can not even begin to explain the suffering this has caused my family; my brother sadly died aged 38 after many attempts of suicide due to his conditions; my sister has had a terrible life and is on high medications; my mother has always blamed herself for listening to her doctor.
Primodos has affected my life too even though my mum was not given it when she was pregnant with me. I have been a carer all my life to my siblings and up until very recent my sister was living with myself and my family. My mum is now dying of Alzheimer’s and sadly will never understand now that this was not her fault, she was a young married woman listening to what the doctor told her which was to take Primodos to test to see if she was pregnant.
Prof. Heneghan’s study clearly identifies an association with Primodos and my siblings birth defects.
Thank you Lorraine, for sharing your family’s story, and for raising very important questions
I found out about Primodos just under 2 years ago, and only thanks to Marie Lyon and the media campaign for the Sky documentary. I am still reeling from finding out about this hideous drug, and I have a long way to go now to fully understand and come to terms with what it has done to me.
My heart breaks for all of us, the mothers and the children, we all deserve the truth, and Prof Heneghans’ review is a huge step forward.
We deserve the truth and justice. Xx
Seem to me the truth – scientific proof – starts to show via internet more and more, via the 2018 studies, Christine. I hope justice follows. Thank you
I cannot understand how the government and doctors would allow such blatant testing on humans without their knowledge. Not only morally wrong but incredibly illegal. This government has seen so many cover ups over the years. Its about time they stop and realise that its always going to come out in the end. the sooner they realise this fight will not stop, until justice has been served, the better.
We all support your fight for the truth and wish you all the very best in your cause
Many thanks Rich. Yes the silence about the DES tragedy is more than upsetting. Today’s doctors are ignorant or wrongly believe this is something of the past, while effects are transgenerational. I think there are many common points between the DES and Primodos drugs, and in The UK I mean. Glad to see the government might finally do something for the Primodos-victims.
I was born in March 1968. My mother was given Primodos. I have deformed clubbed feet and missing/deformed fingers on one hand. My life has been restricted as i cannot walk or balance well. I have to wear surgical made shoes. I have had to live for 50 years with the stigma and negative comments surrounding disabled and less able people. My parents were founder members for the Association for children damaged by hormone pregnacy testing – I have attended and have spoken at the Bayer AGM meeting held in Cologne. I have numerous interent postings, comments and images and i own one of the Primodos victims support pages. I have 2 daughters and have a full time job in an office – i cannot walk nor stand for long periods of time. I am UK registered disabled
JOHN WALMISLEY SANTIAGO – PRIMODOS SURVIVOR -See FB Primodos duogynon victims
Many thanks for adding your testimonial too John
In 1975 I visited my GP. Forty-three years later I remember every detail about that visit. I was a 22 year old married woman who suspected pregnancy. My doctor took from his briefcase a packet containing 2 pills which I took in good faith according to his instructions. I wondered at medical science. Little did I know that these 2 innocent looking pills would alter the normal development of my unborn child. How naïve was I?
When Michelle was born she had life threatening complications and was critically ill. She had a Congenital Diaphragmatic Hernia. An abnormal opening in her diaphragm, had allowed her bowel, spleen and part of her liver and kidney to enter her chest cavity causing crowding and underdevelopment of these vital organs. One lung was crushed and her heart was enlarged. She was rushed 40 miles away for life-saving surgery. She was given no hope of survival. However due to the skills of the surgeons she did survive. She was 3 weeks old before I saw her again. Throughout her life she has had ongoing medical problems which still impact on her life today.
The systematic review and meta-analysis by Professor Henegan, an independent scientist with very impressive scientific credentials, shows that the use of oral HPT’s in pregnancy is associated with increased risks of congenital malformations.
On perusing the study it is abundantly clear that the anomalies suffered by my daughter are as a consequence of exposure to Primodos as they are clearly identified as being associated with an increased risk. These malformations are confirmed in Professor Neil Vargesson’s study which found links to congenital abnormalities and yet this study has been found ‘inconclusive’? Absurd to say the least. Together these studies along with the documents from the archives in Kew and Berlin and testemonials from victims and their families is clear proof that Primodos has led to abortion and malformations to the foetus.
The use of this drug to confirm a pregnancy was a grave error. Who is accountable? Should it be me? Throughout life we are all accountable, not only for what we do, but for what we do not do. There was no need for me to take this harmful preparation when there was a perfectly safe alternative available. By the time I was given Primodos there had been concerns for over a decade and other countries had banned it. Those of us affected by this dreadful drug have been traumatized not only by Primodos but by the deceit of both the drug company and our own government to take ownership of the truth.
My daughter’s life and those of the victims and their families has been profoundly affected, each and every day. We deserve justice. We have the proof. We need the truth.
Three things can NOT be long hidden : the sun, the moon, and the TRUTH ~quote~
Thank you Nan
I know ow exactly why my nearly full term baby daughter was still-born with spina Bifida and brain damage. I was also issued with these 2 horror pills Primodos. I’ve had 4 babies.However, 3 healthy babies, but the one and only time I took Primodos my baby was stillborn. With serious problems.
I was given Primodos in 1971 at 6 weeks pregnant, when the neural tube is forming. My daughter was stillborn with anencephaly. I have since had 3 healthy children. I started to suffer with depression after she was born on my 20th birthday.
There was no opportunity to see her or hold a funeral and found out on what would have been her 18th birthday that she had been put in a coffin with an unknown person to be cremated.
Thank you for sharing your story with our readers, Shirley
Hi i have only just put two and two together ,i was born in 1961 and i was born with congenital knee dislocation, my right knee was round the other side, and a heart murmur,mi am now wondering if this may of been due to primodos, my parents are not alive anymore to ask, and i do not know how to find out…any help would be appreciated, as you can imagine i have ongoing mobility issues and constant pain.