Medicines and Medical Devices Safety Review : Joan Ryan MP Comments

6 thoughts on “Medicines and Medical Devices Safety Review : Joan Ryan MP Comments”

1. 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.

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   1. Thank you for sharing your story, Susan,
      Best wishes,

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2. 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
   duodenal atresia
   missing kidney
   horseshoe kidney
   bilateral septal defects of his heart
   stenosis of heart valves
   annular pancreas.

   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

   We went onto have 4 more children but there was always 1 missing. We were afraid to get too close to them emotionally, in case we lost them. There is only 1 photo of the other 4 taken without my knowledge as I always felt guilty photographing them as if I was betraying our firstborn
   Colin lived and died 50 years ago and we still grieve for him
   The GP got £35 from the drug company Schering/BAYER

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   1. Many thanks for sharing your very tragic story with so much information, Ruth

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      1. 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.

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         1. Very tragic story Susan, thank you very much for sharing it with us and for providing so much details

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