Nadine and Sam’s story

Guest authored post

On the 1st October 1999 my son, Sam Montgomery, was delivered stillborn weighing 9lb 6oz, requiring CPR and adrenaline to restore his heartbeat. During his delivery, an obstetric emergency called shoulder dystocia arose meaning his head was delivered but his shoulders remained stuck for a period of twelve minutes. Various last resort measures to deliver his shoulders failed, including several attempts to break his clavicles and an attempt to push his head back inside in order to perform a Caesarean section. I have no doubt that the foetal head sustained more damage at that point. Finally, two attempts were made to sever my pelvic cartilage/pubis symphysis but the scalpel blades detached both times. My obstetrician stated that with one final surge of adrenaline on her part and sheer force, she pulled him out by his left arm. I was told he was likely deprived of
oxygen for all of the twelve minutes.

Sam spent a difficult six weeks in SCBU. He initially had his lungs ventilated, suffered with seizures due to hypoxic encephalopathy and had trauma to his face, head and neck with subdural haematomas.
He was immediately diagnosed with left sided Erbs Palsy and his subsequent diagnosis of Cerebral Palsy came when he was three months of age. Needless to say, I too was in a poor way, both physically and mentally. I still bear the scars today.

In 1999, when I had first discovered I was pregnant I was told that due to my type 1 diabetes, my pregnancy was considered ‘high risk’ and I would attend a special joint diabetic-obstetric clinic. Throughout my pregnancy I attended fortnightly for ultrasounds as well as a review by both diabetic and obstetric consultants. I worked hard on my glycemic control and was very proud that my HbA1c never rose above 6.7%. From 32 weeks onwards, I could see from the centile chart that my baby was large and continuing to gain weight rapidly reaching the 95th centile despite meticulous diabetic control. This worried me, so I raised my concerns repeatedly to my consultant, particularly about my ability to deliver my baby vaginally given his size and my small stature at only five foot. I was continually met with reassurances that I didn’t need to worry and that I was being monitored closely. I was so concerned by the lack of discussion that I asked my mother, who was a GP, to attend an appointment with me to speak to her. I had hoped that she would listen to my mother doctor to doctor if she wouldn’t listen to me and my concerns would be addressed. She reassured my mother that they were taking good care of me but still no discussions took place nor risks mentioned. My last scan at 38 weeks was cancelled by my consultant as she felt the increasing size of my baby was fuelling my anxiety. To be honest I think she was simply fed up with me constantly asking about the size of the baby. As it turned out, I had every reason to be anxious. I was told I would be brought in for induction of labour at 38 +5 weeks but I still felt that my questions had not been addressed, nor other options for delivery discussed. The labour was long, needing augmentation with oxytocin and the following evening due to failure to progress I was advised that we should progress to theatre for a trial of forceps. At this point I was asked to sign a consent form, but I had no real understanding about the procedure being proposed or potential complications that could arise. The subsequent tragic events that occurred in theatre need no further elaboration.

Months later, after my long recovery I wanted to understand more about Sams tragic outcome. Despite a basic explanation of events by my consultant, no answers had been given as to why this had happened, and if it could have been predicted or prevented. It was my sister, through her training in anaesthetics which included that doctors have a duty to fully consent patients, discuss options and inform them of significant risks, that supported me towards finding answers.

We researched what the risk of shoulder dystocia in my particular circumstance might be. After looking through GMC and Obstetric college guidelines, as well as many scientific papers on the subject, it became clear that my care with regard to explanation of risks, options for delivery and informed consent had been well below standard. I uncovered that I had a 9-10% risk of shoulder dystocia with the risk factor of diabetes alone, and this was increased further by my small stature. Furthermore, my prolonged labour, use of oxytocin and rotational forceps all increased that risk further. I was devastated to uncover that these crucial risk factors had not been disclosed to me despite my requests antenatally. By the time I arrived in theatre, I had almost every known risk factor for shoulder dystocia but somehow this information was withheld from me. Shoulder dystocia was all but inevitable. I was devastated that I had not been given the information I was entitled to, nor been allowed to be a partner in the decision making process with regard to the delivery of my child. To me, it was inconceivable that decisions with potentially far reaching consequences were being made for me without my knowledge or involvement. It is after all Sam and I that have to live with the consequences of those decisions.

An initial complaint letter to Bellshill Hospital was composed which asked, amongst other things, why I hadn’t been informed of these risks, and why other options for delivery had not been discussed. I will never forget reading the reply from the general manager, Mr Grant Archibald who wasn’t even medical. It read along the lines of “after conducting our own investigation we are satisfied that the standard of care given was adequate and we are sorry for the unfortunate outcome.” I was livid. This wasn’t “unfortunate” this wasn’t an unknown patient who presented with no past medical history. This was a known high risk patient who had been seen fortnightly for almost forty weeks with a known macrocosmic baby on the 95th centile. This was a patient who had worked vigilantly doing her part to control her blood sugars to ensure her baby had the best outcome. I look back and wonder what the point was of attending over twenty antenatal appointments and being reviewed by two consultants each time.

What upset me the most wasn’t the lack of a basic decent apology or the way my son and I were discarded afterwards. It was that there wasn’t even a glimmer of acknowledgment or understanding that I had a right to self determination. No one cared or even recognised that there was a deficiency in my care, and my primary concern was that if people didn’t recognise that, then no positive changes could be made. And if no positive changes were going to be made then it surely followed that this would happen again. So my goal became to ensure that others didn’t go through what I did and that the right discussions should be taking place regarding options and risks between doctors and patients, making decisions together.

I want to emphasis that this wasn’t about blame. I was actually asked in court by the defenders if I blamed Dr McLellan. My answer was simple. I didn’t blame her, the word itself has connotations of bitterness and I wasn’t bitter. However, she was responsible. It was her decisions that led to a tragedy that could easily have been avoided.

There are times in life where you have to stand up for what you believe in, even if you are standing alone. I felt alone in my belief that patients have a right to be at the centre of the decision making process for many years until I met Lauren Sutherland. If I hadn’t met her I have no doubt that Sam and I would have given up years ago.

Our journey through the courts was long and arduous. We failed on every count at both the Outer House and the Extra Division of the Inner House at the Court of Session. The initial judgment from Lord Ordinary was a very difficult read. It was a real unexpected rejection of patients rights. I continued to feel that my voice wasn’t being heard which was compounded by Lord Bannatyne stating that I wasn’t a credible witness and that my memory of events had been somehow skewed by the unfortunate outcome. The sad thing is, twenty-one years later, I can still even remember what my consultant was wearing that day. He also stated that in his opinion had I been offered a cesarean section that I would have declined. I found this absurd given that I gave evidence to the contrary, that Dr McLellan herself and all four expert witnesses stated that had they mentioned the 9-10% risk of shoulder dystocia, most if not all diabetics would ask for one. He also didn’t accept that I raised concerns more than once about delivering my large baby, even though it was well documented in both my case notes and in my consultants reply letter to our initial complaint. Regardless, in my opinion it ought not to have mattered how many times I raised my concerns, once should have been enough to engage in a discussion. It truly seemed as though no one was listening to me.

In 2014 we took Sam’s case to the Supreme Court and they assembled a full bench of seven judges. This gave us an indication that they were taking this matter very seriously as I was told they only do this when they are considering a change to the law. For the first time, I felt as though my voice was being heard. The GMC intervened at the appeal, highlighting the good medical practice guidelines from the era of Sams birth, and emphasising the need for doctors and patients to make their decisions together. A year later in 2015, all seven judges unanimously agreed, and the ethical guidance with respect to valid consent that was already essential for doctors was now passed into law.

Lord Reed, one of the Scottish Justices, who is now President of the Supreme court read out the decision. He stated:

“the doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative. The test for materiality is whether, in the circumstances of the particular case, a reasonable person in the patients position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significant to it.”

The Supreme Court also added that with the advent of the HRA patients are now to be viewed as persons holding rights, and not just passive recipients of the care of the medical profession. But the words that brought me to tears were the words of Lady Hale. She highlighted my doctors viewpoint that cesarean sections are not in maternal interests and added:

“ Whatever she had in mind, this does not look like a purely medical judgment. It looks like a judgment that a vaginal delivery is 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 voice.”

Finally my voice was heard and understood. This was a real victory, not only for myself and Sam but for every patient in the UK.

Although I never received a formal apology I take so much comfort in knowing that the law now protects patients right to autonomy. Although it took nearly 16 years, I am pleased that it concluded in the Supreme Court so every patient in the UK benefits and paternalistic medicine can truly become a thing of the past.