Jennie Hill’s twin boys were born at 28 weeks and have suffered from ‘preverbal trauma’, a condition where children suffer extreme trauma before they are verbal, causing a range of problems later in life including mental illness.
Now adults, Jennie’s boys are doing well, largely thanks to intervention. Jennie shares what she’s learnt about this form of trauma that can occur due to a lack of parental comfort, especially in the context of children separated from their parents on the US border.
Childhood trauma is known to be a cause of lifelong disadvantage. It might be the result of serious childhood accident or illness; physical, sexual or emotional abuse; or sustained neglect.
Studies show victims of such trauma may not only face ongoing personal suffering as adults, they’re also vastly over-represented amongst those who later develop addictions, serious mental health problems, or face prison.
Where the trauma occurs before a child is able to articulate their distress, outcomes tend to be even worse than for older children. This is called pre-verbal trauma. And the most serious consequences of all occur when the trauma happens without effective parental support. While children who have appropriate parental reassurance during traumatic events often don’t suffer long-term harm, the worst health outcomes are for infants and children who suffer without the sustained comfort of at least one loved, trusted adult.
While many people don’t understand childhood trauma, most do recognise how serious it is for children to be forcibly separated from their parents. Even people who are fine with the mistreatment of adult asylum seekers are appalled when child refugees are traumatised. Little wonder, then, so many erupted in anger when they first heard thousands of children were separated from parents while seeking asylum in the United States recently. And they’re right to be thoroughly alarmed.
I first learned about pre-verbal trauma a few years ago from a psychologist treating one of my twins, Paul, after he became ill. Until that time I’d no idea it even existed. I did know premature babies tended to have worse educational and psychological outcomes than full-term infants. And I thought I’d worked hard to understand and alleviate these potential ill-effects. So when the psychologist pointed out behaviours Paul still had, as a young adult, consistent with the after-effects of pre-verbal trauma, I was astounded: even more so when I realised Paul’s twin Sam had the same characteristics.
Our sons* were born at 28 weeks gestation and were extremely ill, spending more than three months in hospital. While we visited them as much as possible, we couldn’t hold them at all for several weeks, and then only for short periods every few days. This was 24 years ago and parental involvement with prems has increased: yet even in 2018, critically ill babies can’t be handled much, so premmies still don’t receive a lot of parental contact.
Crucially, we weren’t allowed to comfort them while they underwent a myriad of painful medical procedures. In hindsight, I’m really sad about this. Because what we didn’t know was extreme prematurity is now starting to be recognised, in itself, as a cause of pre-verbal trauma.
Moderate prematurity (where a baby only needs some weeks in hospital to mature) doesn’t appear to damage babies, but trauma is caused where babies are critically ill: requiring intubation, multiple drips, blood transfusions, regular tests and injections and other constant, painful procedures to survive. This is what my boys experienced: Sam for only a couple of weeks, but Paul for several months. Of course, the care was necessary and saved their lives, but it damaged them, too.
Intubation techniques for premmies were only developed a few years before Paul and Sam were born, so most very prem babies born before the mid-1980s simply died. That’s why pre-verbal trauma caused by prematurity has only been discovered very recently, with those suffering from it just now reaching young adulthood.
As they grew, my twins seemed to recover well from their adverse start. After some struggles early on they did well at school, loved their sport, had great friends, and excelled creatively. Sam was talented at writing and art while Paul became a highly gifted musician. They both passed Year 12 and went to university.
However, as they got older they also displayed similar quirky behaviours. For example, both were homebodies, seemed to sometimes feel unsafe in public, and hated crowds and noise. Both sometimes refused to go to planned activities at the last minute, as if they couldn’t face leaving home. Both tended to catastrophise the future and were hard on themselves and dismissive of their achievements. Both were somewhat disorganised emotionally and academically. And both were often very tired.
They’re fraternal twins with very different personalities, so I thought these similarities were because they copied each other. It never occurred to me the behaviours may have been the after-effects of prematurity. Yet once I was told about the link, all became clear. All symptoms on display were part of a PTSD response they would have developed as tiny babies, where the brain reacts to fear and pain and then remains always in “Fight, Flight or Freeze” mode.
This explained all the symptoms I’ve described above. It’s hard to have fun, relax or even think when you’re constantly on the alert for pain and danger. It’s exhausting to try to be happy when you’re constantly afraid. And when you’ve suffered early trauma, you can’t remember how non-traumatised people even feel, so you blame yourself for not being able to be more like others.
I’ve talked to my boys often about this. They deserve to know what’s going on, and why. I asked Sam if it was okay if I included him in this article, and if he wanted to describe how this trauma response feels. He said: “It’s hard to go out socially; I get nervous and often feel that I might get attacked or make someone angry. Sometimes I stay home because it’s too hard to push myself, but I know I miss out on fun because of this. I know I look exactly the same as everyone else but internally I’m always anxious, and this is exhausting”.
In the event our boys were, and are, lucky. They live in a wealthy country with educated parents, good schooling and great medical care. Yet even so, my sons faced and continue to face challenges. They’re getting there and both have professional help, but it has been an effort both on our family’s part and, more importantly, on theirs. They’re the bravest, strongest and most resilient young men I know because of how they’re succeeding despite these negatives, and because both keep trying so hard despite living, perhaps permanently, with low-level PTSD.
And while my boys have bright futures, the fate of thousands of children in the US who’ll never find their parents haunts me. I know what childhood trauma looks like even when it’s properly treated, so I know that unless sufficient resources are allocated to these US children’s ongoing mental health needs, the separations will continue to be an unmitigated disaster.
Of course, I also care deeply about Australian children, including those unfairly removed from parents (and still, shamefully, from Indigenous parents); mothers in prison whose children are taken away; children in detention; and those whose mothers aren’t properly supported during violent relationships. Such trauma is also now understood in the context of intergenerational trauma. Yet sadly, our understanding of these issues (let alone our refusal to allocate sufficient resources to reversing the effects) seem light years away.
Trauma is woefully misunderstood in most societies. I still get blank looks and amusement even from medical specialists (and especially, I’ve noticed, from psychiatrists) if I even raise it. Yet if we don’t start to put more money into its treatment, we’ll never create societies free of its after-effects. Trump doesn’t understand this, and Australia, with constant funding cuts to our most vulnerable people and families, isn’t much better.
That children continue to face avoidable trauma that will adversely affect their entire lives is an international disgrace. We must do more to understand and prevent it.
Because every society is, and must be, judged on how it treats its children.
*Paul and Sam gave their permission for this article to be written.