This morning I read an article in The New Yorker by Dr Rachel Pearson, an American pediatrician, entitled The Durable Feeling That a Child is Always at Risk. In it there is a thought-provoking look at the way medical professionals speak to parents and how it helps both the doctors and their patients to reframe the way they think and the language they use. It was honestly quite refreshing to read a piece on the psychology of parenting from the point of view from a medical professional who wants to impart the relevant clinical information, without causing distress or emotional trauma. It must be an incredibly hard job to talk to patients and parents of patients in the case of children when there is distressing information to impart.
Vulnerable Child Syndrome (VCS) is something that affects the parents, family or caregivers of a child that has at one point, been in either genuine, or perceived danger but is no longer in that situation. The child may have made a full recovery and be in perfect health, but the parents develop a long-term feeling that the child is susceptible to injury or illness. That something is wrong, or could go wrong. This results in various negative behaviour in both parents, and eventually in children too including severe health anxiety and over protectiveness.
As someone who suffers very much from anxiety, including diagnosed post natal depression, anxiety and PTSD, I definitely struggle with my feelings of worry around William’s health. As many of my readers will know, both William and I almost died during childbirth and at only 24 hours old, they believed he had meningitis and he was taken away for a spinal tap. Fortunately, it turned out to be a severe infection which 7 days on an IV cleared up for him, whilst I had sepsis. Ever since then I’ve really struggled with my fear and anxiety about his health and many times relived those moments in the hospital when I thought that he, or I, or indeed both of us, weren’t going to make it.
I remember clearly being woken up at 5am in the morning the day after he was born by a team of intimidating neonatal doctors telling me that they needed my consent to take William away for a spinal tap. They were very brusque with me and honestly, hyped up on painkillers, hooked up to an IV and suffering with sepsis, drifting in and out of consciousness after what was nearly 4 days without sleep, I didn’t really understand what they were talking about. Then they woke my husband up, and he gave them consent as well because I think it was clear that I was out of it. But for a long time afterwards, and still sometimes even today, I have dreams about that moment, about being told by a stranger that my son may die if I did not agree to testing that I didn’t understand.
They were brutal in telling me this. I kept asking why – which I’m sure was annoying and frustrating to them – but my brain was completely filled with fog. I’d been sucking down oramorph (oral morphine) all night and they just told me plain,
“If we don’t do this, if he has meningitis and we don’t treat it, he could have brain damage. He could suffer from blindness, deafness, or worse.”
“He could die. We need you to agree to this now.”
It wasn’t really clear to me what I was agreeing to and what a spinal tap was, or whether that came with any complications or problems of it’s own. All I could think was those words – he could die. Or he could be left brain damaged, deaf and blind. No one said the words “He’s most likely fine but we just need to be sure.”
I wonder if there was a better way to give me that information, a way that wasn’t so clinical and cold. They wanted me to consent as absolutely quickly as possible and I think that my emotions and trauma in the moment were secondary. Of course, my sons health was of critical importance and should come first – but was there a way of doing this that would have been better for both him and for us as his parents? Could they see that I was in complete shock? Did no one think to have a nurse come and check on us or chat to us about what was going on, to reassure us both as we waited?
Then there was a delay. They said they’d be back in an hour – but three hours later as the midwife shift changed, I had to ask where my newborn son was. We just sat there for hours waiting, my husband and I, whilst the ward bustled around us, whilst babies cries and families visited with balloons, whilst women bundled newborns into car seats and went home, wondering where our son was, what he was going through and what the outcome would be, without an update or word of comfort from the over busy staff, who no doubt saw us sitting there in silence and shock and thought we didn’t need anything. Eventually I was told he hadn’t even had the spinal tap yet, that the neonatal team were watching him and he was in the queue as it was very busy. He could have been sitting there right next to us for hours, instead of us being alone in our agony. It’s a form of torture, to tell someone that their child could die and then just walk away and leave them to it.
When I found out that he did not have meningitis, I was immediately relieved of course, more so than I will ever have words for… but that feeling of waiting just never really seemed to disappear. Every time a medical professional approached us for the next week, I was on edge. It’s been two years, and that spectre of fear still hovers behind me no matter how many times I chase it away.
So when I read about doctors like Rachel Pearson who try to understand that language and the way you speak to the parents really matters, it makes me feel like someone is on the right track. The trauma of thinking that your child will die, the trauma of those seconds, minutes and hours is deep-rooted and I’m glad that there are steps being made in some countries to understand and create guidelines that treat both the children and their parents as a patient whose health, both physical and mental, should be cared for. But I feel like that system just wasn’t present in the UK for me and I wonder if it would have made a difference, or if I’d still be the ball of anxiety that I am today regardless.
I also realize that although my hospital experience was bad, we do have many doctors who understand that the parents of young children are affected by their illness just as much as the children themselves.
I recently took William to the doctor because he had started limping quite severely. The doctor watched a video that I’d taken and agreed that he had a severe limp in his left hip. He went through a history, checked William’s general health – temperature, mouth, ears, eyes and so on, and then did an examination of the legs and hips, checking that they were the same length, moved correctly and all that jazz. He then diagnosed William with irritable hip – a very common childhood condition that causes inflammation in the hip after a cold or virus, which William had just had. I’ll be honest, I had googled. I know you shouldn’t, but the fact is google does have a lot of useful information. It also has a lot of scary information.
Google had listed leukemia and other bone cancers as one of the possible reasons for a limp. Thanks Google! But I knew it was going to bother me, so I brought it up. The doctor didn’t patronise me or dismiss me, he didn’t mock my fears, he nodded and said yes, that was one of many symptoms for more severe problems. Then he walked me through the reasons why he didn’t think this was the case with William, point by point, so I could understand his diagnosis and why he, as a medical professional, wasn’t at all concerned and nothing needed to be investigated. He was understanding of my fears and re-assuring, and we took up way more than the allotted 10 minutes appointment time but he didn’t rush me out, ultimately telling me if the problem didn’t resolve within 2 weeks, to return. A week later, the limp was gone.
I felt that the GP had taken the time to realize that I was worried and he had resolved those fears by explaining things in a way I could understand. In the hospital, in that life-or-death moment, either the staff didn’t understand that the language and way they imparted the information could negatively affect me, or they simply didn’t feel they had the time. The time wasn’t because of William, since he then waited over three hours for the procedure to start so it wasn’t an emergency, but rather I’m sure, those staff had many patients to see and no time in their schedule for sitting down and explaining it to me.
I’m absolutely sure that they cared and would hate to think of causing anyone unnecessary suffering, but ultimately, they left me feeling far more fearful than I needed to be and that feeling of fear has never gone away. It lingers and I’m reminded of it every time I read a negative news story about a child dying, every time I see a grape that hasn’t aggressively been cut into quarters, every time I use something toxic in the home, every time I hold his hand walking near a road. That could kill him, this could kill him, so could that, that, and that, there’s always that nagging little concern that I have to confront and move past.
I don’t think the NHS uses the term Vulnerable Child Syndrome, at least I haven’t been able to find a reference to it so far, but I was diagnosed with post natal PTSD and anxiety. I’ve gone through Cognitive Behaviour Therapy, I’ve explored medication and I’m still struggling – but I feel self-aware. I’m always on a waiting list for a psychologist and talking therapy and am continuing to work on my problems. I feel like I’m aware of my own paranoia and irrational thoughts, and I talk openly about my fears to my family, friends, medical professionals and strangers on the internet, aka you, as my own personal form of therapy as well as hopefully, to encourage others to talk, and educate those who haven’t experienced these feelings. I think I’m a good mum despite being a bit broken and I know I do the best I can which shows just how far I’ve come, as I certainly didn’t believe I was a good mum when I was first diagnosed.
Reading The Durable Feeling that a Child is Always at Risk this morning really triggered a lot of both positive, and negative feelings for me. I’m glad I read it and I think it helped me gain an understanding of medical professionals and parents like myself who have experienced trauma of one kind or another. I hope that other medical professionals read it and research the topic too because I really believe that language and the way we’re given medical information deeply matters and could save unnecessary suffering in the future.