Imagine being told your precious, much-wanted, much-loved baby will not survive. Imagine having to make heartbreaking decisions on behalf of your baby. Imagine cuddling your baby as they breathe their last. Imagine leaving your baby behind at the hospital.
These things all happened to me. In real life. The unimaginable happened to me.
My son Hugo died at the age of 35 days in February 2014 after being born when I was just 24 weeks’ pregnant. Hugo was delivered by emergency C-section to save both our lives because I had pre-eclampsia and HELLP syndrome, and he spent his life in a neonatal intensive care unit (NICU).
So, to sum up: a critical illness; traumatic birth and waking from a general anaesthetic in intensive care; my baby fighting for his life in a NICU, and my baby losing that fight, dying in my arms.
Any one of those things would be likely to leave someone with enduring trauma. All four in quick succession? You may not be surprised to hear I struggled emotionally to cope with ‘normal’ life.
Hugo was cared for at a hospital two hours away from our home, and we were fortunate to be able to stay on site. When we returned home empty-handed my partner and I both knew we needed counselling to help us deal with what had happened, and soon.
Counselling for bereaved parents is vital. Their world has just fallen apart, their hopes destroyed and future lost to be able discuss their feelings without judgement, find positive ways to adjust to the ‘new normal’ and move forward with their lives.
Emotional support can often be difficult to find because there is no standard provision: much of it is provided by locally-based charities. It is common for bereaved parents to feel unable to focus on anything and to feel utterly lost, especially in the early days after their loss. This means that the parents need guidance – most appropriately perhaps from a relevant healthcare professional – to help them navigate the system.
We had to arrange this counselling ourselves. This was especially difficult in those raw early days: I felt like I had failed, as a woman and a mother, and I hated having to explain over the phone that my son had died. Uttering the ‘D’ word made the unimaginable real.
Added to that, I had to talk about what had caused it all – few people have heard of HELLP syndrome, meaning I had to try to explain what it was when I didn’t really understand it myself. A couple of exchanges that went something like: “Oh,that sounds serious and scary.” “Yes, I know, it’s why I need support!” added to my frustration.
My GP referred me to mental health services; due to a variety of factors, at first it was quite a farce. It was clear no one knew quite what to do with me. I was passed between professionals in different services. I was diagnosed with post-traumatic stress disorder (PTSD) (common amongst HELLP syndrome survivors), depression, anxiety, and a delayed grief response.
I had been avoiding dealing with my grief because the emotions were too terrifying and overwhelming. I thought that if I submitted to those feelings they would take me over and I would never recover. Eventually, after much fighting I was referred to an excellent psychotherapist. During our sessions, she challenged me to face my feelings and find ways of dealing with the scary emotions. The sessions were really tough, and emotionally draining. With her help, though, I have been able to rationalise many of my darkest emotions, acknowledge that grief is not going to go away, and to find a way to live in tandem with my grief. Before the sessions, I found relaxation very difficult but I now have activities such as going to the gym, colouring-in, and meditation to help me unwind and have more energy to invest in getting myself back in to the world.
For most of the time since Hugo died, I wanted to assert control over my life – a natural reaction to those events that I had no control over. This included developing a range of habits and behaviours aimed at avoiding things that are likely to upset me, be a trigger or cause a panic attack. I developed these habits and behaviours as a defence mechanism, and in the absence of constructive support.
Since getting the support I needed, I have been able to expand my horizons. I have socialised more (though still under controlled circumstances, and with people I know and trust). I am even planning to return to work next month. Whereas before I would feel guilty if I spent time on myself, I am better able to relax, feel happier, be ‘me’.
Grief is not something I will ever recover from fully. Things will never be ‘better’. But they are better than they were, and I would not be in this better place without the support of my psychotherapist.
I know from talking to other bereaved parents that my experience is not unique. A recent discussion on the MatExp Facebook page revealed some massive gaps in provision of emotional and psychological support for bereaved parents.
Access to bereavement counselling appears to demand tenacity at a time when people feel most vulnerable. Bereaved parents deserve better emotional support. I am someone who will seek help, and I worry for those who are less able for whatever reason to be proactive about finding the support they need.
Such support will make the worst time of a parent’s life that tiny bit easier.
I am co-hosting a #PNDHour chat about babyloss on Twitter on Wednesday, June 3 between 8pm and 9pm. Anyone affected by babyloss is very welcome to join in.