Shaken baby syndrome: ‘Moment of madness’ that changes lives forever

We all know babies cry – that’s how they communicate. But until you become a parent, you may not realise how piercing and persistent a baby’s crying can be.

"It creates an emotional response in the parent and it is meant to," says Tess Noonan, quality assurance manager with the Irish Society for the Prevention of Cruelty to Children (ISPCC). "It is nature's way – it is not meant to be something you can sit back and ignore quietly."

But when nothing a parent does soothes a baby, ongoing crying becomes extremely challenging and may disrupt the bonding process. It causes parental stress and frustration, can lead to depression, relationship problems and, in extreme cases, intense anger that results in a baby being harmed.

Non-accidental head injury is the leading cause of death and long-term disability among babies who are maltreated. It is also known as abusive head trauma (AHT) and used to be called “shaken baby syndrome”, because the injuries are typically, but not exclusively, caused when a baby is shaken or thrown.

"Shaken baby syndrome" continues to be a contentious matter. UK neuropathologist Dr Waney Squier was struck off by the General Medical Council (GMS) in March, while being lauded by the Innocence Project in the US.

She disputes the established belief that a trio of symptoms – haemorrhages on the surface of the brain, haemorrhages in the retinas and a swollen brain – are proof of abusive behaviour and argues that they could have innocent causes.

However, a GMS tribunal concluded that she had given misleading evidence in six cases involving the deaths of babies aged between one month and 19 months with brain injuries.

Disabilties

Research into infants who have sustained a subdural haemorrhage has shown that 25 per cent will die as a result of such head injuries, and between 50 and 80 per cent of children who survive will suffer from severe and life-changing disabilities, including learning and behavioural issues, cerebral palsy, seizures and blindness.

"It is really a moment of madness and can change lives and relationships for ever," says Prof Alf Nicholson, consultant paediatrician at the Children's University Hospital, Temple Street, Dublin, paraphrasing a comment by US professor of paediatrics Carole Jenny.

“Most parents,” he continues, “cannot conceive that this would happen. Grandparents and partners of the person who may have been involved cannot conceive that anybody they love could do something such as this. That is the difficult thing about it – it is very difficult for junior hospital doctors, nurses and healthcare professionals as well.”

While there is ongoing research into the incidence of non-accidental head injuries among babies in Ireland, Nicholson estimates there is at least one case a month in the 32 counties. The prevalence was higher during the worst of the recession, 2008-2011, which he believes was indicative of the additional pressures many parents were under.

“We saw a lot more of it; it has eased in the past year or two,” he says. “We have had deaths here – but it very rarely goes into courts. For me, it is not about ‘whodunnit’ but that the baby is protected and it doesn’t happen again,” he stresses.

There is an increased risk of a repeat incident if you turn a blind eye, he explains, because not only is nothing done about the situation in which the frustration built up “but babies who have had a shake injury and a subdural haemorrhage are much more irritable afterwards, so the cry gets worse and worse”.

Nicholson will be addressing a conference in Cork this Thursday, April 14th, which is aimed at raising awareness of non-accidental head injuries and the need for preventative measures to protect both babies and parents.

One of the conference organisers is Pat Kelleher, a social work team leader with South Lee social work department in Cork city. He knows what it is like to stand beside a small baby lying in a neo-natal unit, knowing that the injuries are irreversible – "seeing a child's future absolutely destroyed in a moment of somebody losing control".

“Good people do bad things,” he says, recalling one case of a young mother from another country who had little support here and had also had bad experiences as a child. She was working long hours, had post-natal depression and was struggling to adapt to motherhood.

“The baby was crying excessively and, in the midst of it, she lost it for a few moments and, unfortunately, there was serious damage done. It was like a perfect storm that came together in her life,” says Kelleher.

Prevention programme

He hopes that the conference will be a step towards introducing a programme that might prevent parents like her reaching breaking point. The “Coping with Crying” initiative by the National Society for the Prevention of Cruelty to Children (NSPCC) in the UK could, he suggests, be adapted to an Irish context.

Sally Hogg, who led the development and implementation of "Coping with Crying", will tell the Cork conference about its successes so far.

“The most common, serious form of abuse in babies is babies being shaken and when we look at the causes of that, crying is very often the trigger,” she says. In the UK, nearly 200 babies a year suffer non-accidental head injury.

At the NSPCC, she was looking at how parents could manage their distress at their baby’s crying, to avoid them reaching a point where they would harm the baby.

“From there I got more interested, generally, in how we support parents to cope with crying,” says Hogg.

In researching possible preventative measures, what really stood out was a programme in New York State where they had developed a short film about the dangers of shaking a baby to be shown to new parents just before they left hospital with their babies.

“That had huge impact and reduced the number of non-accidental head injuries by 47 per cent,” she reports. “We looked to replicate that in the UK but we wanted to build on it.”

While the US film focused on educating about the harm that could be done to babies, the NSPCC wanted to build in some wider messages about how to cope with crying.

The resulting film, as well as highlighting how easily a baby can be harmed, with a case study of a child who was injured through shaking , includes parents talking about how they felt when their babies kept crying and how they dealt with it.

“That really is about normalising for parents that babies do cry a lot and that you can feel stressed about that,” says Hogg. The NSPCC also wanted to help parents understand that there are things that they could do to soothe their baby and to stop themselves reaching breaking point.

“A key aspect of that is to say that, if you really are losing it, it is fine to put your baby down in a safe place and walk away and calm down, and then come back to them.”

The Coping with Crying film was piloted in 24 hospitals and birthing units around the UK, being shown to parents just before they were discharged with their babies.

“It seemed to be a key moment of reality hitting – ‘Gosh, I have got this baby I have got to go home with him,’ ” she points out. It is also a time when dads are more likely to be about and, as, statistically, abuse is more likely to be perpetrated by dads and male partners, it’s really important to reach them.

Evaluating research

Research evaluating the programme showed that the 10-minute film had a significant impact, with 99 per cent of parents remembering it six months later and the majority reporting that it helped them to keep calm and soothe their baby.

The rate of reported injuries among babies with feeding, sleeping or crying difficulties was also shown to be lower if their parents had seen the film.

However, while the content was scoring very highly, the NSPCC felt that the number of parents seeing it could be increased, so it invited health services to suggest more places it could be shown. As a result, it was expanded to other settings and times during the maternity journey, such as at ante-natal classes and post-natal check-ups.

When evaluation of the second stage is complete, it is hoped that there will be a compelling, evidence-based case to make the film available to every parent of every baby born in the UK.

It needs to be a universal programme, says Hogg, because although the proportion of those who are likely to harm their babies is quite small, “we can’t predict who those people are going to be”.

Risk factors for abuse include families where there are drug and alcohol problems, domestic violence, mental health problems and history of criminality.

However, a study that took a more in-depth look at these showed that “in about a third of cases, even if we had known everything about that family we couldn’t have predicted that that baby was going to be shaken and that is why it is very important it reaches everybody”, she explains.

A 20-year study in Auckland, New Zealand tracked a huge increase in the number of children referred to a child-protection team for suspected abusive head trauma – from 88 in the first decade to 257 in the second.

It also concluded that the probability of AHT was similar regardless of socio-economic status or ethnicity.

For parents with higher socio-economic status, who are used to being able to solve all their problems, crying can bring its own specific challenges, says Hogg, who is now senior commissioner for children’s social care and wellbeing with Surrey County Council

“The impact of this programme,” she says, “is not just about preventing abuse but more broadly about helping parents to improve their confidence as parents and reduce the impact of crying on mental health. That really does affect everybody.”

The conference entitled Non-Accidental Head Injury, Babies and Parents: An Opportunity for Prevention in the Irish Context is on this Thursday, April 14th, at the Bessborough Centre, Cork. For more details call: 021 435 7730 or see bessborough.ie

swayman@irishtimes.com