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.
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Guest post: “If I had known, Sam would have been born unharmed”
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BojanaMumsnet · 28/09/2020 10:26
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