Like so many dreams, it all started here, with life shining bright on a flickering ultrasound screen.
We were so happy and excited when we found out my wife was expecting our first child. The pregnancy seemed to go perfectly – it was “low risk”, all of the scans seemed normal, and one doctor even described it as “boring” (in a good way).
We followed all of the advice we were given, did everything we thought we could to prepare, and trusted the doctors and midwives completely. We approached the due date with increasing excitement and anticipation.
Once the 20 week anomoly scan was clear, we didn’t think anything could go wrong, as long as the delivery went smoothly. We did all the usual things – went to antenatal classes, lovingly assembled a nursery, and settled down to wait.
The due day came and went. A few days later, there was still no sign of arrival, and my wife noticed that she hadn’t felt movements for a while.
She wasn’t too concerned based on the advice she had been given – but we decided to ring up and go in to hospital to be checked, just for peace of mind.
When we arrived, we received the devastating news that our son’s heart had stopped beating, and our world collapsed.
“I’m sorry. There’s no heartbeat”
Those might have been the words, but actually I don’t think it was ever said. Much of what happened immediately afterwards was a daze, although there will always be parts of it that will stay with me.
Like the room being plunged into darkness as the doctor closed the shutters to use the ultrasound. Gathering around the screen, staring at the pixels, hopelessly willing any sign of movement that never came. My wife’s scream, of indescribable anguish, that will haunt me until the day I die.
We were told that it was an inexplicable tragedy. My wife, who had followed every piece of advice to keep our baby safe, had to go through the unimaginable trauma of delivering our dead son.
We were supported by some wonderful midwives and doctors, people who really cared. They had come to work that morning to bring life into the world, not death, and I know it deeply affected them too.
I believe that they would have done anything to prevent us, or any other parent, from being in that situation together. But they didn’t know what they could have done – and anyway, it was too late. Two days later, our son was born in silence.
He was perfect in every way. We called him Hamish.
As I cradled him in my arms, I made two promises to him. Firstly, that I would live my life and do things that I would never have done if he hadn’t been my beautiful son. And secondly, that whilst he never had the chance to take a breath, whilst I still had breath in my body I would never stop trying to give other babies the chance of life that he was denied.
In the weeks that followed, we did the thing that no parent should do: make arrangements to bury your child.
Instead of choosing rattles, we were choosing flowers. Instead of singing lullabys, we were picking music for the ceremony to mark his short life. We registered his existence in the same office that we should have registered his birth, sat next to a box of children’s toys.
And carried his coffin, step by heartbreaking step.
Months later, the nursery door stayed shut, the contents too vivid a reminder of what had been lost. But it had to be confronted at some point. We folded up his tiny clothes, and put them in a bin bag, and dismantled the cot, along with our hopes for his future.
Throughout all of this, we believed what we had been told – that his death was simply inexplicable.
It was only later we found out the terrible truth.
We had hoped that the funeral would provide a degree of closure, that we could start to rebuild our shattered life. But there was much more bad news to come.
We were shocked to find out that stillbirth is a worldwide epidemic, and actually the UK had almost the worst stillbirth rate in the developed world – yet the risk had been completely invisible to us – an unspoken taboo. It was even more horrifying to find out that we had been fed the myth that stillbirths were usually inexplicable and unpreventable. In fact, the opposite was the case. So we started to look at lot more closely at the care that Hamish had received. It turned out that my wife had been wrongly assessed as low risk right from the first appointment, and things only got worse from there.
“It was totally avoidable”
The second thing we realised was that my wife had been given incorrect information about monitoring Hamish’s movements – one of the key ways that she could monitor the health of our baby herself. She should have been told to monitor movements closely and report any change in fetal movements. The pathologist told us that Hamish had been in distress for around two days before he died of hypoxia, and my wife wrongly blames herself to this day for not realising that something was wrong – but she had no chance with the wrong information. We will forever wonder what would have happened if proper processes for reduced movements had been in place – the post mortem confirmed that Hamish was otherwise healthy, he just needed to have been monitored appropriately and delivered on time.
Thirdly we found that one of the biggest risk factors for stillbirth is undetected fetal growth restriction – babies not growing as well as expected.. We trusted our hospital – so when we found a BBC headline reporting that many trusts weren’t following Royal College of Obstetrician and Gynaecologists’ recommendations to use customised growth charts to reduce stillbirth risk, we were shocked that our hospital was one of them. In fact, our unit wasn’t plotting Hamish’s growth on any chart – not even a population-based one. We obtained a chart directly from the Perinatal Institute to see what it would have shown, and it was horrifying reading. Our son’s growth had visibly slowed and become almost static. The hospital should still have noticed this from a month of flat fundal height measurements and followed its guidelines, but completely failed to do so. The chart made it painfully obvious that something had been wrong and our son had been at risk – another huge missed opportunity.
Incredibly, we also found out that my wife should have been sent for monitoring at 40 weeks, on the day that he should have been born. My wife’s blood pressure had climbed to the border of hypertension, a potential indicator or placental problems. We later discovered that the junior doctor had been instructed to send her for monitoring, but inexplicably failed to do so. Hamish was in distress at the time. Two days later, he was dead.
The pain of losing our son is indescribable and will always be with us, made so much worse by the knowledge that so more could have been done to keep him safe.
Babies will continue to needlessly die unless we learn the lessons
The death of a baby can never be ‘put right’. It is too late for Hamish. But it is not too late for other babies to have a chance of life, and their families to avoid the devastating consequences. We just want to make sure that it never happened to anyone else.
Sadly, however our hospital has very different priorities. We were told that Hamish’s death would not be investigated or treated as a ‘serious incident’, despite being the unexpected death of a full term baby, who would have had every chance of living if he had been born on time. When we asked for the medical records, we were sent a copy with the key pages excluded. We were told that doppler results were normal, when the lifesaving scan was never undertaken.
It was all about managing legal and reputational risk, with no regard to learning lessons to save other babies lives and ensure that mistakes weren’t repeated. We were lied to, presumably in an attempt to avoid us taking action. In the circumstances, we had no choice but to submit a formal complaint. The eventual response was appalling, with a few admissions but apologies so vague as to be meaningless, let alone an action plan. The crucial evidence about growth had been ignored completely. There was no investigation or explanation of the doctors failure to refer for monitoring, the final missed opportunity to save his life.
After pointing out the flaws in the response, we eventually received a separate investigation report, which was a slight improvement but directly contradicted the complaint response in key areas and contained no root cause analysis. We met with the Trust’s Chief Executive and other staff. Incredibly, despite the previous admissions, the Trust’s most senior obstetrician decided to deny everything, stating that she wouldn’t have done ANYTHING differently herself.
Given the cultural problems at the hospital, we will never get an explanation for what happened. The hospital did not even question the doctor who made the final error until three months after his death, at which point she claimed not to be able to remember what happened. As it proved impossible to get the hospital to do the right thing, Hamish’s death was ‘investigated’ by the Parliamentary & Health Services Ombudsman who confirmed multiple service failures and missed opportunities to save his life, and maladministration by the hospital.