Guest post: “If I had known, Sam would have been born unharmed”
Following on from the results of our survey with Birthrights looking into decision-making in childbirth, Nadine Montgomery charts her journey to the Supreme Court to cement patients’ right to make an informed decision
Posted on: Mon 28-Sep-20 10:26:21
(75 comments )
Twenty years ago, my son Sam was born with Cerebral Palsy following a very traumatic delivery. This was when my journey began in wishing to bring about improvements for patients. Although it’s quite a tragic story, it’s one that I’m always willing to share if it will help in understanding the importance of patient choice.
As a type 1 diabetic, my pregnancy was considered ‘high risk’ and I attended a joint diabetic obstetric clinic. Fortnightly ultrasounds were conducted to monitor my baby's growth. My last scan was at 36 weeks, with Sam measuring on the 95th centile. I asked questions repeatedly throughout my pregnancy about delivering a large baby and I was always met with reassurances. I was told not to worry and that they were monitoring the pregnancy carefully. At no point were options of delivery discussed with me or discussions around the risks of delivering a larger than average baby vaginally.
I was brought in for induction of labour at 38 weeks and it was once again noted that I was having a large baby. I went into labour almost immediately after induction. After many hours, oxytocin was administered to augment contractions. The following evening, I was exhausted, unwell with a high temperature and a decision to take me to theatre for a ‘trial of forceps’ was made. A junior doctor brought me a consent form marked ‘trial of forceps’ with no explanation. I had no real understanding about the procedure being proposed or the potential complications that could arise.
In theatre my doctor attempted to deliver my baby using rotational forceps. After some time, it fell disturbingly silent. There were no alarms going off or people rushing about like you would expect in an emergency, so when the anaesthetist told me she was going to put me to sleep I knew that something serious had gone wrong. I remember tearfully closing my eyes not knowing if I would wake up again or ever see my baby.
Thank God I did wake up, although in immense pain and to the tearful faces of my family. I was told that I had a baby boy who was very ill. The wonderful nurses brought me polaroid pictures of him and updated me regularly.
The Supreme Court stated that patients should now be viewed as “persons holding rights, rather than passive recipients of the care of the medical profession”.
In the following weeks I found out what had happened in theatre. Sam's head was delivered using forceps however his shoulders became stuck for 12 minutes. Last resort measures to deliver him were unsuccessful including attempts to break his clavicles, attempts to push his head back inside in order to then perform a caesarean section, and finally several attempts to break my pelvic cartilage/bone. He was eventually delivered stillborn requiring CPR and adrenaline to restore his heartbeat.
Sam had lacerations over his face, neck and head with subdural haematomas and suffered from seizures due to hypoxic encephalopathy - a brain injury caused by oxygen deprivation. He spent many difficult weeks in Special Care Baby Unit.
After the events I wanted to understand why this happened and I researched GMC, NICE and obstetric college guidelines as well as many scientific papers and discovered that as a type 1 diabetic I had a 9-10% chance of the baby's shoulders becoming impacted, an obstetric emergency called shoulder dystocia. I was shocked. Why was this information kept from me when I had repeatedly asked questions about this? That 9-10 % risk combined with my small stature (I’m only 5ft) was another risk factor, I felt adamant that I should have been told about the possibility of shoulder dystocia. If I had known, I would have opted for an elective caesarean section and Sam would have been born unharmed.
A complaint letter was sent to the NHS Trust hospital and it was met with a standard reply that they were sorry for the sad outcome etc, washing their hands of any responsibility. This infuriated me. It appeared as though no one recognised that there was a deficiency in my care, and my concern was that if people didn’t recognise that, then no positive changes would be made. And if no changes are going to be made then it surely follows that this will happen again. So, it quickly became my goal to make sure that this never happened to any other woman, and indeed any other patient, ever again.
I wanted to ensure that others didn’t go through what I did, and that the right discussions should be taking place regarding options/risks between doctors and patients, making decisions together as stated in the GMC guidelines.
I first visited my lawyer in 1999, three months after his birth, and it took fifteen long years to finally reach the Supreme Court in London. They assembled a full bench of seven judges who all found in my favour and the ethical guidance with respect to informed consent was passed into law. The Supreme Court stated that patients should now be viewed as “persons holding rights, rather than passive recipients of the care of the medical profession”. The poignant words of Lady Hale brought me to tears. She stated that whatever my doctor had in mind, it didn’t look like purely a medical judgement. It looked like a judgement that a vaginal delivery was in some way morally preferable to a caesarean section so much so that it justifies depriving the pregnant woman of the information needed to make a free choice. That was exactly how I was made to feel all those years ago.
Sam is now turning 21 next month and studying Software Engineering at University with the help of a 1:1 carer. I am very proud of him and all the obstacles he has had to overcome, but saddened because this could have been so easily prevented.
The rights of a patient now need to be heard and respected with doctors and patients making their decisions together. After all, it is the patient, not the doctor, that has to live with the consequences of those decisions for the rest of their lives.
By Nadine Montgomery
Wow this brought tears to my eyes.
I'm so sorry that you and Sam have had to live the consequences of this.
I was told my baby had a risk of shoulder dystocia too, but my consultant made it sound like it was no big deal and could be easily managed. After a difficult delivery with forceps and an episiotomy, luckily my daughter was born without suffering any harm save for cuts and bruises, albeit I suffered physical side effects for at least 2 years afterwards and vowed that any next birth would be by c-section.
You're absolutely right that there should be totally informed consent, and all pregnant women need to be wary of hidden agendas within the medical profession.
I have no words, I’m so sorry this happened to you and Sam.
I'm so sorry that happened to you. I was pregnant with a big baby.
I asked if I would be induced early. I was told there was no evidence that this would help.
I was asked to take part in a study which would randomly allocate early induction vs no induction until past term. That felt like playing Russian roulette.
In the end I pushed for a maternal request c-section which was granted. I only did this because I read stories like this.
I'm so sorry this happened to you and your baby Sam. I had my daughter in 1999 which ended in a traumatic labour, was taken to theatre and my DD was born via Forceps.
I'm so glad you have pioneered for this and hope this helps women on the future to make a fully informed decision around the birth of their baby.
There is so much to be admired about the way you have fought for justice and prevented the same happening to many other women and babies.
Thank you for writing this post, and all you have managed to achieve ❤️
I echo what @bumblebeebiz has written. Your fight for justice has, as you know, changed how all clinicians (not just obstetricians) now approach consent. Through the suffering you and Sam have experienced, many lives will be changed. Thank you
Your post made my blood run cold. I could have been you, so easily.
I'm so sorry for what happened to you and Sam and am glad to hear that he's making excellent progress. Thank you for sharing.
My child was born after a three day induction, rotational forceps, two attempts at standard forceps and then a significant shoulder dystocia. Fortunately the delay was not so long as the one Sam encountered and though they did crack my pelvis getting my baby out, she was born breathing. However her eye was permanently damaged, she looked like she'd been ten rounds with Mike Tyson and I have been left with such significant damage that five years later I'm looking at a hysterectomy.
I was never warned of any dangers and I said I didn't want forceps, I consented after being told it was the safest thing to get my baby out quickly as she was in danger. I'm only 5"2, small build, she was an over 9lb baby. Had I have been aware of the risks, I'd have said no and forced an ELCS.
She will need glasses for life and has a small scar on her face, but other than that she is fine. I am grateful, and thankful to others who raise awareness so that other women do not have to go through this sort of trauma.
Also in tears reading your story and the tragic outcome for Sam.
I'm also furious at the way many women are treated in childbirth. I hear stories all the time of emergency situations which could have been avoided by a c-section 24 or 48 hours earlier. I've never heard a positive story about forceps.
I would like women to be more open about birth injuries too. It's so much more common than people realise.
This breaks my heart. The attitude to us as mothers of big babies is very blasé, even now. It's very difficult as a non medical person ( is) to choose the best option without the information or even be given the choice. Sadly money, time and availability of medicinal professionals is all put before outcomes.
I delivered an very overdue 11 lb baby after being fobbed off and being told big babies are lovely, yes they are, but not to deliver vaginally. I had ventouse and he was so shocked by it and struggled to breath.
I was treated very badly over my fears in my second pregnancy. Baby was 8lb 8 oz but a girl, plus I organised a repeat gestional diabetes test after learning big tummies on scans are a sign and was diagnosed and out on a strict diet six weeks before my due date. This probarly made a big difference as both my children are 91 centile for height and weight still.
I felt despite being under consultant care in my second pregnancy that I wasn't taken seriously. One said well you did it before. It damaged me and my son has certainly had some issues mentally ( nothing diagonsed
Thank you so much for highlighting this and for taking it all the way to the Supreme Court.
My 9lb 4 son was also born with severe cerebral palsy, and died aged seven, over 20 years ago.
He was 2 weeks overdue and they hadn't noticed he was breech until it was too late.
I didn't take it to court as I couldn't face the stress of court proceedings on top of caring for a little boy with major problems and also working with a husband who was abroad with work for much of the time so again, thank you so much for pressing this issue forward and for changing procedures for others following you.
@BojanaMumsnet Do you think forceps should be banned ? Or a better judgement based on a women's build, pelvis size should be made ?
I'm very tall and my structure is bigger than yours at 5ft, but they used ventouse not forceps. It's so nice to hear your son is doing ok, but so sad his whole life was changed by his birth.
I agree @mostwomencanbetter. I also don't hear of positive forceps experiences. I remember asking about them at NCT classes and being brushed off with the old 'if you stay calm and do your breathing you won't need them' nonsense. Same as epidurals - not needed if only you breathe properly apparently. Let me tell you, I was glad I'd had one when I had three forceps attempts, an episiotomy, a torn to shreds vagina and a cracked pelvis to show for my birth. No epidural needed, really?!
I wish I'd have read a thread like this before giving birth. As I said, I didn't want them but after 3 days of drip induced labour then two hours of fruitless pushing and being told it was the safest thing to get my baby out quickly I consented. I wish I'd have had the knowledge to say NO and mean it. I was scared and did as I was told. My child is scarred for life as am I (though, I do appreciate how lucky we are, still).
Incidentally, my second baby (born by ELCS, a wonderful calm experience) was also a whopper. Over 9lbs when born at 39 weeks. I had no diabetes, I am not overweight and I'm 5 foot 2. I just grow big babies, considering the size of me. After my first birth the obstetrician said there was no way my pelvis was big enough to get a large baby out, and that all future births should I have any would need to be an ELCS (also because I'd had a 2l + haemorrhage after my first birth). I did bleed in the ELCS too but only ('only'!) 1l so not as severe.
I am so sorry to read of this, it must have been so scary for you, and so sad that Sam's life has been affected so much. I am usually shocked to hear these stories, but its not really a surprise any more, the more people you talk to, the more people have had bad decisions made on their part and it's just not right.
I had a bad experience having one of mine, was transferred from birth centre as a precaution, then had to wait for a Dr to be available before I was allowed to deliver as they were concerned I might bleed. However there was no Dr! I went through hell as I was desperate to push and my baby was there ready to come out, it was 3 hours along when my babies heart rate dropped so low that the midwife decided to take my life in her hands and let me deliver my baby. He came out with the cord three times around his neck. I was fine. Then a few minutes later my baby suddenly went blue and had to be revived. We were discharged after a few days but my son has had lots of problems, he's had strange tic like movements since he was about 6 months old, he's now 7 and being assessed for autism but I believe that his birth has something to do with his issues, however when I mention this to consultants etc they are very dismissive.
Hello Nadine, I was familiar with the facts of your case from reading the Supreme Court judgement - I am a lawyer working in this area. It definitely impacted on my own childbirth choices. Thank you for all your hard work and I am pleased to hear how successful Sam is. All the very best to you and him.
I delivered a 10lb baby vaginally. Thankfully my baby was unharmed, but I've suffered pain, scarring and prolapses since. Women need better care.
Thank you for writing this and I am so very sorry for what happened to you and Sam. I am so very grateful to you for taking this through the legal system and changing the legal rights of all people around informed consent.
Some years ago I suffered irreparable damage during surgery and also consulted a lawyer. After several years of due process and a highly traumatic high court case the surgeon was found liable on grounds of insufficient consent. I was, of course very familiar with your name and some details of your experience because you set that precedent. My case was still an unusual one.
The reason this is so important is that medics are finally being forced to be open and honest about the risks that medical procedures carry. Signing a consent form without knowledge of these risks is not consent.
I thank you for your bravery and send my very best wishes to your family.
So sorry to hear your experience.
My son's birth was shoulder dystocia, stuck for 3 minutes. He weighed 9lb 5oz. I thought he was dead. I'd had a growth scan late on, they knew he was going to be big. I'm 5"3 and was tiny. Apart from a paralysed arm for 24 hours he was ok. He is now a strapping 5"7 13 year old. I thank god every day that he is ok.
With my next pregnancy I asked for a CS - they said 'No' as the SD had been 'well-managed'. I was scared to death, I'd read all the research off the depths of the internet and knew I was at increased risk of another SD. As it was, I developed polyhydramnios so had a planned CS. My baby was then delivered at 37 weeks weighing 7lb 4oz.
Reading your post, my heart goes out to you.
Thank you for posting this and thank you for taking your case to the supreme court. You and Sam should be very proud for how you have changed the law in relation to informed consent for the better, although it is tragic that it took your personal experience for this to be highlighted. I hope others take inspiration from you as far too often women's choices are not respected or they are not given all the information as there are other agendas from midwives and cost factors at play which would not happen in other areas of medicine. Again, thank you
Women in childbirth and after are treated appalling here. I can't understand all this hero-worship of the NHS or the believe that the only alternative is a US style system. 'Choice' is often absent in childbirth, that's forcing medical procedures on a person. Would never happen to men.
A huge thank you for your monumental efforts to see this to the end. And very best wishes to Sam for his future.
Wow- I am so sorry to read about your terrible treatment but also well done to your son and what he has achieved.
You have done a wonderful thing to get the law changed on this, thank you!
I was recently in hospital for breast cancer treatment and I was blown away by the amount of information given at every stage. This was especially noticeable on the consent forms I had to sign. Every risk was read out and talked through with me, so I was clear about what I was allowing.
Thankfully in the end, my operation went without any problems or after effects, but at least I know all the possibilities. It would have been so much worse to finish up with complications that I wasn't prepared for.
It sounds like your strength and determination has brought these procedures into protocol for the medical profession.
Thank you again, and good luck in the future to both you and your son.
I'm a 1to1 for a wonderful little 9 year old little boy in a mainsteam primary with severe cerebral palsy, he is unable to walk and I take care of him at school doing his daily physio etc and everyday I think about how this wonderful little boy can't walk and join in a football game with his peers all because of a complication at birth which is all honestly could of probably been prevented.
I'm so sorry what happened to you and Sam and I wish him all the best for his future
I am also in awe of you. I have watched your case with interest after nearly losing my DS. The care I received was diabolical and myself and DS will have to live with the after effects forever. Thank you for taking on such a epic task.
Thank you for all you've done for many women and their babies, I'm very pleased to read Sam is doing so well.
I had a forceps delivery, I was induced due to being overdue and knew DS was big due to growth scans in pregnancy. He arrived at 42 weeks weighing just over 9lbs after a 2.5 days induction. I had spent an hour pushing, for DS' head to spring back up after every contraction/pushing so an instrumental delivery in theatre was advised. There was no concern about DS at all, it was hospital policy to let first time mums only do an hour of pushing before assistance.
Frankly I wanted it all to be over but I remember being very quickly stripped and put in a gown with the consent form thrust in front of me with no real time to explain the risks, I remember hearing the words 'physical disability' and 'death'. I also signed for a CS if needed.
DS was born, with no issues for him, just a slight mark on his face which faded very quickly. I however, despite an episiotomy, tore and ended up with a third degree tear and a 3 litre haemorrhage. DS is an only child as my husband and I are still traumatised by it all. My DS first day is a blur to me, all I remember is sobbing as at that time I was doubly incontinent and was terrified and vulnerable. I have regained physical control but things, 4.5 years on, will never be the same. My stitches opened and they weren't re done, and I still struggle with sex.
No one could say if I'd had a c section all would have been fine, that too has its risks but I do wonder how different my postnatal period could have been, especially going on to develop PND if that physical and emotional trauma hadn't occurred. I'm very thankful my son was fine but 4.5 years on I still very emotional when thinking about my son's birth and not in a positive way.