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.

[FunDragon]

Nadine

I’ve followed your case for a while (I’m a solicitor). You are amazing for so many things, but particularly for pursuing your case all the way to the Supreme Court despite the first instance judge and the appeal court making the wrong decisions. It is a great shame that you had to go to the highest court before you and your son got justice, but I’m so glad Lady Hale - who is fantastic - and the other judges reached the right decision.

Your bravery and persistence should help protect other women and children.

Congratulations to you on winning your fight and congratulations to your beautiful son on all his achievements in the face of adversity. You are both inspirational.

[SummerHouse]

For what you have done, and continue to do. Thank you.

[MrsBobDylan]

Wow, I can only imagine the strength you have needed to draw on to get through your son's birth, then to fight for change for so many years while caring for your disabled son.

One of my dc has T1 Diabetes and I find the ignorance of his condition among some healthcare professionals astonishing.

We all have much to thank, and admire, you for.

[shipperssss]

Thankyou for everything you have achieved, so sorry for what you and Sam have gone, and continue to go through.

I am currently pregnant with DC3 and waiting to see a consultant re an ELCS. My first two births both resulted in distressed babies who required rescue breathes, time on SCBU for DC2 (albeit short) and 2nd degrees tears for myself.

I am aware that we have been lucky in our outcome, as there has been no long term effects for any of us. But my DH refused another baby specifically because of my labours.

I have already had the spiel from my midwife that I really don't need a CS and I will struggle to find a consultant who is willing to do it, but I am terrified of giving birth again.

Reading your story has cemented the fact that this is my right, and I will do what I need to to protect me and my baby (both physically and mentally).

Thankyou again!

[GetUpAgain]

I'm so sad to read your story and in awe of your dedication and hard work in helping future mothers and children. Sam sounds as amazing as his mum.

[Notabadger]

I'm sorry to hear of what you've been through.

Last year I had my second baby. Scans showed he was likely to be big and I am short. I was actually offered an ELCS at my 36 week appointment. I was pleasantly surprised after reading on here about women's experiences of not being able to choose (although I declined in the end). I had a good experience re info and consent at my induction. I imagine that your court case influenced the doctors thinking so thank you!
Your tenacity is inspiring.

[willitbetonight]

I'm so sorry about what happened to Sam. Thank you for deciding to try and change things. You are remarkable.

[GingerFigs]

I am shocked by the OPs and other posters stories, some of these are so sad and traumatic, leaving such lasting damage physically and mentally. My heart goes out to you all and thank you for sharing, and especially to Nadine for pursuing this to the Supreme Court.

[minipie]

I’m so sorry about what happened to you.

I also have a DD with cerebral palsy following various forms of bad practice during her birth. Like Sam she had to be rescuscitated.


I didn’t know about her CP till she was 3 (we have been very lucky in one sense as it is very mild) and I didn’t realise some of the practices at her birth were bad until I mentioned them at the birth of DC2 and the midwives there were horrified. By this point it felt too late to do anything.

Well done for going ahead, fighting for so long and making a difference for future women.

[faithfulbird]

I am actually very tearful I'll have to come back tomorrow to right something. Hugs. I'm pregnant and just the thought breaks my heart for everyone with a similar experience.

[SnuggyBuggy]

For arguments sake my family have a lot of forceps babies that were born unharmed but they were all small but awkwardly positioned. These forceps births of larger babies sound brutal and like they should never have been attempted. There is far too much ideology in obstetrics.

[minmooch]

@Mumblechum0 I'm so sorry for the loss of your son. Gentle hugs

[minmooch]

Thank you for writing this. The strength you have shown to take this to the Supreme Court is inspiring. Your fight will have saved many a parent and child face what you and Sam have.

[Allourboys]

Thank you Nadine for your tenacity and bravery and for sharing your story here. That it took 15 years and that you didn’t give up is astounding. That you had to fight so hard is appalling but what a difference your fight has made. You and Sam must be so proud of each other. Thank you.

[Mosasaur]

I had a similar experience. My baby measured on the 95th centile and I was 41 weeks pregnant when I went into labour. At no point had anyone discussed with me the difficulties or risks of giving birth to such a large baby. They didn’t even schedule an induction or c section, if I hadn’t gone into labour naturally I don’t know how long they would have left me.

After 24 hours of labour the midwife unit decided I wasn’t progressing and transferred me to a hospital ward for induction. There was still zero discussion of the size of my baby. They didn’t tell me he was back to back. Thankfully the consultant who was on duty had the common sense to insist on a c section. She was the first and only person who explained the risks of the situation and a c section was the obvious choice. I had to wait two hours for a theatre to be available and the midwives spent the entire time trying to convince me to change my mind and have induction instead, saying things like “you don’t have to do this, you can still have a natural birth”. I found it very confusing and upsetting.

Thankfully my baby was born safely via c section. But I strongly feel there is a lack of information about risks and a stupid obsession with pushing for a vaginal birth even when it’s not the safest option. This was 2017 so it was long after the OP’s experience; clearly nothing has changed.

[espressoontap]

I'm so sorry for what you've been through. I had my son 4 years ago and needed forceps - nothing was discussed with me. I bled heavily and needed transfusion after transfusion.

I had my daughter last week, who was measuring big and I was booked for induction at 39 weeks. I liaised with the consultant and had an elective caesarean - it has been amazing and after a traumatic delivery four years ago it has made me angry I wasn't listened to or consulted.

Sam sounds absolutely wonderful and like they're doing so well at university

[HappyHedgehog247]

Thank you for everything you have done and for sharing your story here. I went and read the ruling and am delighted to also see you are the patron of Birthright. Good luck to you and Sam.

[Noconceptofnormal]

Your searing honesty, your relentless fight and giving your son every opportunity are all so admirable. You have achieved so much and have do much to be proud of. Very best wishes to you and Sam, thank you for sharing this.

[MistyMinge2]

Thank you for sharing this. When I think about it I realise I came close to a potential forceps delivery of a big baby that I had run out of strength to deliver no matter how much help I had, and was completely stuck anyway due to his position. Thankfully, a change of shift meant a different consultant took over and could see a vaginal delivery even with assistance was not going to have a good outcome and got me in for a csection with no more 'just a bit longer to wait and see'. I have also heard of many similar stories from friends, colleagues and acquaintances over the years. It's scary that there are so many 'near misses'.

I hope your son has a fantastic life despite the challenges he faces.

[picklecustard]

Why IS there an obsession with pushing for vagina l birth though? Even in situations where there are risks and clear benefits from choosing a c-section? It can’t be cost when you consider inductions and instrumental deliveries in theatre and all the other additional expense of attempting vaginal birth, so why is there such opposition to letting women choose caesarean or simply informing them properly to help them make a decision? What’s at the core of this obsession with vaginal birth at all costs?

[seething1234]

You're story is harrowing to read. I worked closely on a case in Ireland, one of the "Portloaise babies" case in Ireland and some of the details were very similar (oxytocin, the use of forceps) The baby, in the case I was working on is never far away from my thoughts and I often think of their family and what they went through.

We are so vulnerable in labour and too many have been let down.

Thank you for sharing your story, it's just not fair.

[tornadoalley]

My son is also brain damaged because of birth negligence. As much as I want his future assured, I also want other mothers and babies never to go through the trauma we suffered. I would love for midwives to listen to a group of mothers whose babies could have been spared or saved, if the midwife had just listened to what the mother was saying.

[Calledyoulastnightfromglasgow]

I am so grateful for your bravery. You have literally saved lives and I wish you and Sam all the very best.

Just before I had my first baby, I was heartbroken to hear a baby was lost due to a junior doctor using a kind of forceps incorrectly. Negligence was admitted. I think about the family and that baby when now and still feel profound sadness and also anger. When I had my baby I felt like I was not in safe hands due to an overworked system and nearly died myself. I just saw a system at a point of collapse. This was edinburgh, 2009. In future deliveries, I had to demand - angrily - the care I needed, no doubt labelled “difficult”. I’m so glad those days are behind me as child in the UK is no joke.

[Calledyoulastnightfromglasgow]

shipper your case touched me. When I had my third I was similar. I asked for an appointment at 34 weeks with the consultant (only see a consultant in scotland if higher risk) and calmly explained my case and said, politely, the risk assessment I had done, and that I wasn’t leaving that day until confirmation I would be booked in for a csection. I wasn’t changing my mind. This was with help from my community midwife who was amazing. I got my csection. Don’t give up - you shouldn’t have this fight - but you will get what you want