World Mental Health Day is coming up this week (Friday October 10) – as it falls within Baby Loss Awareness Week, it’s a perfect opportunity to talk about the importance of easy and quick access to counselling for parents after the death of a baby.
Counselling is vital for the parents, whose 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.
My son Hugo died at the age of 35 days earlier this year 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? It’s no wonder I’ve been struggling these past few months.
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.
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.
Even more frustrating was discovering a grief counselling charity that had been recommended had a very long waiting list, and in any case they don’t specialise in baby loss. They suggested calling CHUMS, who said they shouldn’t see us because they are not commissioned to (in the area I live, they support bereaved children but in the neighbouring area they are able to support bereaved parents too) but one of their lovely ladies came out to see us for a chat anyway because they felt sorry for us. I am immensely grateful to CHUMS for their kindness.
My GP referred me to mental health services; I have explained previously what a farce this has been. The lack of a perinatal mental health service in my area is a significant issue. I have been diagnosed with post-traumatic stress disorder (PTSD) (common amongst HELLP syndrome survivors), depression and anxiety. The long wait for the psychotherapy I need to help me recover from the PTSD has resulted in me in the interim taking medication to help overcome the panic attacks and flashbacks. The referral to psychotherapy was made in June – and I am still waiting for an appointment.
There has undeniably been an improvement in my emotional well-being since early July, when I started the medication. The improvement can be seen in my writing, and in me being more like me more often. What bothers me, though, is not knowing whether this improvement is ‘me’, or the medication. I do not want to be on the medication forever, especially considering the side-effects (they make me feel tired and foggy-headed, basically like being constantly hungover – not fun). Antidepressants are not like antibiotics – while they make day-to-day life a bit easier to cope with, they do not cure the underlying problem.
Petals, the specialist baby loss counselling charity my psychiatrist suggested I contact, has been invaluable. Both my partner and myself were able to benefit from six sessions with a compassionate counsellor who gave us the gift of a safe place to explore our feelings without judgement or platitudes. We started the counselling in late July, nearly four months after Hugo’s death.
Since the events of earlier this year, I have been wanting to assert control over my life – a natural reaction to those events that I had no control over. This control has 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. Obviously, this is not a long-term strategy but the longer someone follows a habit, the harder it is to break. My counsellor astutely observed that I have to be careful that my comfort zone does not become so small I am constricted to a zone the size of a postage stamp.
It is impossible to know whether earlier access to counselling and a quicker psychotherapy referral would have prevented me barricading myself in this comfort zone – but I think it would have helped by giving me healthier coping strategies.
A couple of months after Hugo’s death I was frustrated to learn that the NICU’s counsellor was able offer a service to bereaved parents. After talking to them, I have learned that it is standard practice to leave a ‘breathing space’ for bereaved parents before getting in touch. This ‘one size fits all’ approach fails to take in to account individual parents’ individual needs. I am pleased that the unit is taking feedback on board and making it clear to bereaved parents that counselling support is available through simplified literature that I have created for them.
I know from talking to other bereaved parents that my experience is not unique. Access to bereavement counselling can be haphazard, demanding tenacity at a time when people feel most vulnerable. 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.
Access to appropriate counselling for bereaved parents needs to be made as simple as possible. How parents can access counselling needs to be simply explained in bereavement literature that is as short and simple as possible (too often a pile of leaflets are given, which may be left unread). It would also be useful for an appropriate person to be the parents’ identified support contact, who can arrange counselling and if needed make those difficult phone calls to explain the background. I know all healthcare professionals are ridiculously busy, but such a responsibility is unlikely to take much time. It probably just requires thinking about things differently.
Such support will make the worst time of a parent’s life that tiny bit easier.