Guest post: “If I had known, Sam would have been born unharmed”

[BojanaMumsnet]

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.

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.

[nachthexe]

My 17yo dd2 was born at 9lbs with shoulder dystocia. I had already had one CS for macrosomia. Despite previous CS and NICE guidelines, no continuous foetal monitoring was provided. Born eventually with FHR @ 28bpm with no monitoring for previous 45minutes. CP. She’s hoping to study neuroscience at university next year. Still no resolution on our legal case because as there was no monitoring, they have no proof of when she began to deteriorate.
I know none of this should happen, and love to you all.
I hope Sam ROCKS university, and I would love to hear how he gets on.

[Dazedandconfused28]

This really hit home for me - I'm so sorry for what you have been through.

My baby was also measuring very big & I went through induction & was told he was at high risk of shoulder dystocia too, but this was presented very casually & none of the risks were outlined.

Luckily for me the induction failed & I pushed for an elective c section, which was great.

Afterwards a midwife told me she thought there was only a slim chance of me being able to have the baby naturally. I felt furious that no one told me this or presented me with the facts.

[CactusForever]

I researched your case when I was expecting a large baby several years ago.

I just want to say thank you, thank you, thank you for taking this case all the way to the Supreme Court. It made me feel so much more able to advocate for my rights (though in the end I had an early, short labour).

I am so sorry that Sam suffered the injuries that he did. You must have made him incredibly proud fighting in the courts to safeguard other babies

[shipperssss]

@Calledyoulastnightfromglasgow without derailing the thread, can I just ask how you found the CS with another two DC's to look after? I have lots of support but still worried about it.

[Bubbletrouble43]

@picklecustard I agree. I had to talk the consultants into giving me a Elcs for my twins, both breech. Where there is risk why is this not automatic?

[2littleboyzmum]

I wasn't even told about shoulder dystocia when I had my first. He was born almost 4yrs ago!, he measured on the 90th centile all the way through pregnancy and also 5ft 2. When I gave birth he was facing up meaning he got stuck, I dilated fully but he didn't descend enough so a ventouse and episiotomy later he was born. Shortly after I had a massive post partum haemorrhage because of retained placenta and the episiotomy. I wish I could have been given the option to discuss having my son by c-section and maybe I wouldn't have gone through any of that!

Fast forward 2/3yrs laters I was pregnant again with son 2. This time again I was down for a regular birth no discussions even though again I was high risk but he this time he was tiny. So I brought it up and I said I mentally can't go through that again so I'd like a section, they were ok with it as long as I was. Because of medical conditions I wasn't allowed to be awake as I couldn't have an epidural or spinal because of my condition and medication. However after having my second son I felt way way better that after I did with my first and I think that's because I barely lost any blood the second time - even though they say you loose more with a section than vaginal. With my first I was in for a week, with my second I was in a day and a half.

They just assume you can give birth to any baby and I don't think that's the case they should take into account the height and size of the woman and the size of the baby to make a judgement between mother and clinician as to what the best option is for birth and to listen to what the mother wants. The amount of midwives I had that tried to talk me round from having a section with my second is ridiculous but they shouldn't judge when they don't know the circumstances!

[Calledyoulastnightfromglasgow]

shippers - feel free to PM if you want. I was fine. Sore for a week. Needed help DH the first week. School runs were a “challenge” and a muddle for a while and I signed myself of to drive a bit sooner. Overall still very glad I had the c section .

[PlayerOneReady]

So sad to read this and a huge well done to you for bringing awareness to this issue.

I did research into the dangers of forceps while I was pregnant. They are medieval. The only thing my birth plan said was “I refuse high rotational forceps under any circumstances and will only consent to a c section if this intervention is necessary” or words to that effect.

[Aspergallus]

This is heartbreaking to read.

I’m a NHS Consultant Psychiatrist. I understand consent (and capacity to consent) pretty well as these issues are intimately entwined into Mental Health Act Legislation.

As a Psychiatrist, when I discuss treatment options with patients, I understand that I am giving an individual information that should equip them to make a decision -you have an 80% chance of recovery with this treatment, 30% with this etc etc.

When I fell pregnant with my first child in 2011, I absolutely expected that this is how medicine works. I would be given information and make a decision, informed consent would be standard, as it is elsewhere in medicine.

It was completely astonishing to me to find something more like 50s medicine when I had my own children.

When it came to birth decisions, I asked about my chances of various types of birth, at 35 with my first child -I got shrugs

When I found I had a low lying placenta and I asked about the risks of various outcomes -shrugs

When I was actually in labour, and having the tell tale signs of a back to back labour (constant pain) and I tried to ask what now, what are the chances of delivering naturally -shrugs

We were very, very lucky. Rescued with forceps. Poor apgars that recovered, my son had a mild facial palsy as the only consequence.

I was so shocked by the whole thing, blaming myself. Spent lots of my time breast feeding and researching on my iPad. Shocked to see that all the questions I asked “what are the chances of...” which were answered with shrugs/no one knows/we just have to try and see what happens and every other variation of this, all had answers just like every other area of medicine. But for some reason we don’t share these. First baby, Mother over 35, large baby, presenting back to back -very high chance of instrumental delivery, very high chance of c-section. Why wasn’t I given the info to make a choice?

I had my second baby, free of the naiivity I’d had with my first and did my own research.

When I had my third, I found that they were happy to tell me all my risks (over 40 at this point) and put me on the red path but still no informed consent around delivery. I went over and was strongly recommended to have an induction. What are the chances of proceeding to a vaginal delivery rather than section from an induction? Shrugs

Three babies, multiple different professionals , two different hospital trusts. Same vague answers to questions that we do actually have the answers to.

Why?
Moral Judgement?
Misogyny?
Paternalism?
Costs?

I just don’t understand why we still don’t uphold the high standards of informed consent in obstetrics as we do in other areas of healthcare. It is an absolute travesty.

[Sexnotgender]

Excellent and enraging post @Aspergallus

Women in pregnancy and childbirth are absolutely infantilised and patronised and belittled almost routinely.

[Aspergallus]

@Sexnotgender Thank you. I agree. It is absolutely routine and seemingly barely noticed by those established in the profession.

[terrimom]

I was a forceps birth 57 years ago in the US. All I know is that my mom was anesthetized before the forceps were used, they woke her up for the forceps and pushing. Luckily, I suffered no permanent damage other than bruising and lacerations from the forceps. Reading your birth stories gives new understanding of what my mom went through at my birth and renewed respect for her strength and determination. So sorry to you and Sam for all you've gone through. So proud of you for taking it to Supreme Court to protect other women and babies. Thank you.

[CactusForever]

@Aspergallus your post really hit me in the gut. How can it be anything other than systemic, institutionalised misogyny? I'm thinking of the recent report into the vaginal mesh scandal too.

[Noconceptofnormal]

Brilliant post Aspergallus, you're absolutely right.

[Calledyoulastnightfromglasgow]

asperallagus I love that you articulated what I have seethed about for years.

I think it’s just accepted that women have sub-standard treatment. The decision making is completely removed from us. I was adamant I didn’t want forceps forever my first - the only reason I had researched was due to the death the preceding month in the hospital from their use - I wrote it all over my notes. In the end I had other issues from being terrified to give birth as I didn’t have trust in the system - and was ignored and left alone. (Haemorrhage abs severe tearing). Yes I received an apology but it’s the norm.

I agree it’s misogyny. It’s accepted in medical circles that women should suffer and put up and shut up. Unfortunately it’s turned me incredibly anti- mainstream medicine due to various other cock ups over the years (one involving my child). I am now incredibly switched on if there is an issue and research and decision make myself. It absolutely should not have to be this way

[KisstheTeapot14]

I am so sorry you have had to go through all this.

I know what a struggle it can be to parent a child with SEND (the practical care and the endless battles to get decent education, health care etc). To think this could have been avoided is heart breaking.

I had a birth where we were unobserved with no medical oversight up until the last hour as there was a shortage of midwives (we are rural and had a tiny local birth centre at the time so were at home, and no reinforcements were sent from the city hospital to replace the midwife who had broken her arm that night). Our GP was very angry when he found out, in his words 'anything could have happened.'

Thank you for your courage and perseverance in taking this issue to the highest level and getting recognition for better, more informed choice for pregnant women - for themselves and their family.

You deserve every medal going.

Good luck to you and Sam for the future.

[picklecustard]

@Aspergallus brilliant post, all of it is spot on. Why on Earth are things still this way in 2020?

Unfortunately these attitudes seem to filter down to women themselves who seem to expect and accept that pregnancy and childbirth equals loss of dignity, autonomy and health care professionals telling you what will happen to your body, what is and isn’t allowed. Every time a discussion appears on mumsnet with a pregnant woman asking about making some sort of decision (eg c-section over forceps in labour, declining an induction, making a birth plan) there are always a lot of replies that doctor knows best, the medical team will make those decisions and, of course, once you’re handed a healthy baby you should be eternally grateful that you’ve both come out alive- everything else is irrelevant and selfish to think about.

[Aspergallus]

Thank you for your comments. I know I’m not alone. From my point of view there are women who understand and are aware of the concept of informed consent in some form, and don’t get it...and women who accept this as a reasonable example of healthcare and are fortunate enough to escape unscathed. Perhaps there are tiny pockets of better practice, but I tend to think it is a UK wide problem with the culture in obstetrics and midwifery.

My original post could be 5x as long if I were to detail all the deviations from any concept of informed consent during my 3 pregnancies. It was very much the norm rather than the exception. Amazingly, even when the clinicians dealing with me knew me to be medically qualified. This culture is so ingrained that even when “upping their game” to deal with another doctor (in my last pregnancy I was the doctor wife of the Deputy Medical Director at the same hospital) it didn’t occur to them to deviate from the paternalistic approach. With such a lack of insight into how they are performing, I just don’t know how that’s going to change.

[tornadoalley]

From my personal experience and observations, I agree there is a paternalistic attitude which treats mothers as intellectually inferior to the HCP caring for her, and midwives in particular seem to have a very complacent attitude to childbirth and mothers. Having worked in A&E my mindset was always, rule out the worst case scenario then look at the most simple things. Midwives seem to do the opposite and are convinced the baby will be fine no matter how badly things go during labour and birth. And guess what? They're right. However badly managed, most babies will come through unscathed because nature builds in a marvellous capacity to make it through the birthing process. Did you know babies can withstand 10 minutes without any oxygen? 4 minutes in an adult would cause brain damage. In babies it does nothing. They recover. Nature is a wonderful thing.....and this is what midwives seem to believe in all cases, totally overlooking the most serious ones. I would have bled to death and my baby too if I had not insisted in being seen, albeit 1/2 an hour had elapsed. As it is my child is disabled. Totally avoidable, if the mantra, rule out the worst, had been used.

[b0redb0redb0red]

I’m so sorry that this happened to you and Sam. One of my siblings died in the early 80s - he was deprived of oxygen due to a shoulder dystocia situation and died a few days later. I don’t even have the heart to talk about the series of unlikely and totally unnecessary fuck-ups that resulted in his death.

A friend of mine asked me recently about shoulder dystocia because it happened to her and her newest child. Before, she hadn’t even been told that it existed as a potential issue, even though she had some risk factors. She said she was scared at the time but the midwife had explained to her afterwards that it was nothing to be scared of because shoulder dystocia is really easy for midwives to fix. I didn’t have the heart to tell her my family’s history.

[FiddlefigOnTheRoof]

Thanks to some posters here (Redtoothbrush among others) I had the confidence to push and push for an ELCS when I had my first. Short height, husband who had been a massive baby, history in the family of requiring c sections, extremely overworked local maternity unit with a reputation for turning women away until the last minute and having insufficient anaesthetists.

I am angry and sad at the treatment of women (BAME women in particular) as either submissive or difficult when it comes to birthing choices.

[thebigyin]

I am a social Poet My name is Ben Boyle i have written several Poems about childbirth and also the loss of a child.
here is the first one it is called it started with a kick

To all expectant mothers I wrote this poem 2 years ago
t started with a kick

It started with a Kick when I realized my baby was growing inside me the feeling of wonder that I had down under and living in me.

No matter what they tell about the feeling you get if your pregnant your see.

I am Sick in the Morning and Tired and at night and I cannot bend over to pick up a toy that makes me think is it a girl or a boy.

What's Labor you wonder when they tell you what to expect but it does not stop you worrying about this last step in the creation of life.

Push Breath Push is all you can hear and the pain is all you can bear and ask them to give you more gas and air.

We are nearly there they keep saying to you one last push and you may want to swear and sometimes you do it's like putting a size ten into a size eight shoe.

But then the release when your baby is born and takes its first breath and all is forgotten in the rapture you feel when you hold your Baby and they open their eyes they look at you and you swear that they are smiling its true. good luck to all of you out there hope you liked the poem Ben

[GetThatHelmetOn]

I’m really sorry you have gone through this. I wouldn’t dream to compare my case with yours but I often wonder why in this country women are not offered internals. I went through my pregnancy telling my midwife most babies in my family are delivered at 8 months or by caesarean because we tend to have a smaller space for them to pass. They reassured me a hundred times thatI was tall and have big feet and by that obsolete method of calculation based in massive generalisation, my baby and I would be ok.

We weren’t DS got stuck in the channel and after 27 hours of labour they decided to pull him out with forceps when he was already flat lining, I lost 3 pints of blood and had to have a massive episiotomy. DS scored 2 in the Apgar scale at birth, fortunately in my case they did the run around with the room filled with nurses and doctors shouting at each other on why help had not been sought hours before. So DS was ok at the end.

I wanted to complain, but my community midwife asked to see my own notes of my pregnancy and refused to hand them back no matter how much I insisted those were my notes not hers, she took them anyway, so I couldn’t complain as I didn’t have any record of me repeatedly telling them it was not going to be an easy delivery.

To this date I still feel resentful at how they covered their tracks to avoid being accused of negligence.

[thebigyin]

It may be worth contacting a medical negligence company for advice these people would be used to dealing with these matters and may have legal ways of getting the notes.
There must be procedures and records of births kept for legal reasons for a period of years by law.

There is a website worth checking out here is the linwww.midwivesdefenceservice.com/home/nmc-defence-law-for-midwives/record-keeping-for-midwivesk Good luck Ben

[herethereandeverywhere]

Thank you Bojana. It feels like you fought some of your fight for me. Me and DD could so easily have been you and Sam. I had an awful birth but chance meant our outcome was not as severe.
2 weeks overdue, induced, back to back, Keillands forceps in theatre. That heart-stopping moment when the consultant said "[colleague] could you come to this end please I think we have a shoulder problem." Thankfully she was delivered with some facial cuts (now a small scar) and I have had faecal continence and prolapse issues but otherwise ok. She was 8lb9oz, my first and I'm 5'2, DH is 6'2 with a huge head. I had said in my birth plan I wanted to go straight to CS in the event instruments were needed but they coerced me to consent.
I've posted on MN many times over the years and shared my anger at how the full facts are withheld from us. Years ago (when I was pregant and gave birth) the NHS website used to describe a forceps procedure as the Dr 'gently pulling' on the forceps (He had his foot against the table and the stirrups were the only thing stopping me from being dragged off). In a midwife consultation about my first birth and injuries (NHS attempt to thwart my request for CS 2nd time round) I asked why I wasn't told how bad it could be, the MW said 'we don't like to tell you too much in case it frightens you'. The Consultant who delivered DD was introduced as 'the man who keeps our CS rate down'. Clearly agendas other than ensuring I chose a birth right for me based on fully informed consent was not one of those agendas.
And thanks to Aspergallus - it's enlightening to hear it from a female medical professional. For years I'm left thinking 'is it just me and those other women unlucky enough to have a traumatic birth?' 'Is it my hang up?' It is not. It is a failing system.

I wish you and your son the very best in life Bojana.