Sunday Thought June 14, 2015: Post-Traumatic Growth

Sunday morning seems to be a good time for resonant posts to be shared on Facebook; posts that prompt lots of thought and make me a bit emotional.

Last week was the video of Alison Cameron’s speech, and today it was this post about post-traumatic growth (PTG). To quote the article, PTG is “the phenomenon of people becoming stronger and creating a more meaningful life in the wake of staggering tragedy or trauma. They don’t just bounce back—that would be resilience—in significant ways, they bounce higher than they ever did before.”

This was the part that made me especially emotional:

The term PTG was coined in 1995 by Richard Tedeschi, Ph.D., and Lawrence Calhoun, Ph.D., psychologists at the University of North Carolina, Charlotte. “We’d been working with bereaved parents for about a decade,” Richard says. “They’d been through the most shattering kind of loss imaginable. I observed how much they helped each other, how compassionate they were toward other parents who had lost children, how in the midst of their own grief they often wanted to do something about changing the circumstances that had led to their child’s death to prevent other families from suffering the kind of loss they were experiencing. These were remarkable and grounded people who were clear about their priorities in life.”

None of these parents, Richard stresses, believed that their child’s death was a good thing. They would have given up all their newfound activism, insights and altruism, their re-ordered sense of what really matters in life, to have their child back. “The process of growth does not eliminate the pain of loss and tragedy,” Lawrence says. “We don’t use words like healing, recovery or closure.” But out of loss there is often gain, he says. And in ways that can be deeply profound, a staggering crisis can often change people for the better.

Unlike the parents described in the article, nothing could have been done to have prevented Hugo’s death. However, as I have said numerous times, there is no ranking system. I might not be able to prevent other families suffering the same kind of loss (while I have been working to raise awareness of preeclampsia and HELLP syndrome, they are both thankfully very rare), but I can help prevent other families suffering the kind of additional, avoidable pain and distress mine experienced because of a lack of appropriate support.

That is what Hugo’s legacy is all about.

Me and Hugo

I love that the quote states they don’t use words like ‘healing, recovery, or closure’. In my view – and shared by many other bereaved parents – that these things are not possible.

We know that nothing will or can bring our children back. Things may, over time feel ‘better’ but they will never ‘be better’. We may seem to have ‘recovered’ outwardly, but the grief is always lurking beneath the surface, ready to re-emerge without warning. There is no such thing as ‘closure’ – Hugo will always be missing from my life, I shall always love him and miss him with all my heart.

Nothing can ever replace him. I too would give up all my insights and altruism to have him back in my arms. No hesitation. In a heartbeat.

That is why comments such as I described in this post are so very hurtful. That comment is just a representative example. It demonstrates how we need to look differently at grief, trauma, and how we (the wider ‘we’ – culture and society) work with those who have experienced grief and trauma and work together constructively, collaborating and learning from each other to make a positive impact on the world.

I will leave the final word with this powerful quote from the article:

“[PTG] promises,” he writes, “to radically alter our ideas about trauma— especially the notion that trauma inevitably leads to a damaged and dysfunctional life.”

My philosophy.

 

Life After…The Neonatal Intensive Care Unit

Raising awareness of issues affecting premature babies and their families is something I am very passionate about. I am pleased that today’s Life After comes from wonderful Catriona of the brilliant Smallest Things, which is focused on campaigning for babies born too soon. Here, Catriona writes about what happened after her first son was born much earlier than expected, and his stay in the neonatal intensive care unit (NICU).

Thank you, Catriona, for sharing your story and helping shed light on the life of premature babies and their parents.

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I was just six and a half months pregnant (exactly 30 weeks) when my first son was born. I hadn’t got the crib in which he would sleep, no baby grows or snuggly toys and my maternity leave was still weeks away. I wasn’t ready, but he was in a hurry!

My waters had broken at home and I had calmly taken a taxi to the hospital. I was in a state of shock, perhaps also in denial – this couldn’t really be happening, could it?

When the midwife told me my baby would be born very soon I still remember my words – ‘But I don’t have anything to dress him in’. My first instinct was to care and provide for him. I reached out to him when he was born, but he was whisked away to neonatal intensive care where a machine would breathe for him and an incubator would shield him from the outside world into which he was born so early.

He spent eight long weeks in neonatal care; but for those eight weeks, time and the world seemed to stand still.

Our life became the neonatal unit. The monitors, machines, incubators and tubes. The nurses and doctors, expressing and sterilising. Bottles and boobs, numbers and charts. Eight long weeks and the outside world ceased to exist. Our world was in the hospital fighting and growing.

The relief of ‘making it through’, of finally getting there and making it home was damped by the growing realisation that I was a NICU mum.

It seems strange to write about life after neonatal care, when in reality the journey continues.

I struggled to reconcile what should have been one of the happiest moments of my life, the joy of a new baby, with the reality of trauma, resuscitation, life support machines and emptiness. Pangs of jealousy crept in seeing heavily pregnant women and new baby photos were suddenly everywhere I looked. Sometimes I was consumed with grief and anger at my lost months of pregnancy, the lost time to prepare and the lost time with my baby. For a long time I was haunted by a dull ache on my chest where my baby should have laid his head.

As time went by the anger and grief settled, helped in part by learning that I was not alone in these thoughts; indeed they are common to many women following birth trauma or time spent in NICU. The dull ache on my chest no longer plagues me, although sometimes I wish it did. Instead it has been replaced by something much more unpredictable and invasive – anxiety and post-traumatic stress.

For parents of babies born too soon the slightest cough or cold can cause untold worry. For me, coughs and colds are synonyms with repeat hospital admissions and breathing difficulties; all contributing to vivid flash backs of alarming monitors, breathing tubes and the mechanical rise and fall of tiny chests. This is the untold story of neonatal care and this is how life after NICU can seem for many women. This is why I created and set up the Smallest Things Campaign last year. I didn’t want other mothers like me to happen to stumble across a website in order to discover that the feelings they were experiencing were completely normal and shared by many others. Instead mums should be supported throughout their NICU journey and yes, this means following discharge home.

For me life after NICU isn’t really life after NICU; it is a life-long membership to the Preemie Club, a former NICU mum through and through. I am fiercely proud of my boys, both born early, and am in awe of what I have seen them achieve. Yet even when they are well anxiety and PTSD is always lurking in the background. The journey and life after NICU continues…..

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If you would like to share your Life After…story, please get in touch:

headspace-perspective@outlook.com

 

 

Mental health services cause more distress than they solve

My journey seeking psychological support since my own life-threatening illness and the resulting death of my son earlier this year can best be described as a farce.

Today’s psychiatrist appointment was extraordinary, even by the standards that have previously been set, with the doctor bringing religion into the conversation, and refusing to write a repeat prescription for antidepressants for fear of getting in to trouble for spending the budget. Yes, seriously.

For the benefit of anyone who hasn’t been following my story, in February this year I was diagnosed with the rare, life-threatening pregnancy complications pre-eclampsia and HELLP syndrome when I was just 24 weeks’ pregnant. My son Hugo had to be delivered to save both our lives. Hugo fought incredibly hard for 35 days – he was just too small, and premature. I am heartbroken at the loss of my much-wanted, much-loved baby.

In June, I was diagnosed with post-traumatic stress disorder (PTSD), anxiety and depression. I have been referred for psychotherapy, and have received six sessions of formal counselling from a specialist pregnancy loss charity, Petals (that I had to source myself). My experiences with mental health services have been previously outlined in this post, and this post.

Mental health services in Bedford, where I live are provided by an organisation called SEPT, who describe themselves as “one of the most successful Foundation Trusts in the country providing integrated care including mental health, learning disability, social care and community services.” Local psychiatric services are provided in a wing of Bedford Hospital.

Today I had an appointment at noon. This was the third different psychiatrist I have seen since June. She introduced herself with her back to me while walking down the corridor on the way to her consultation room, so it was lucky I have her name written on my appointment card as I didn’t catch it.

On arriving in the room, I was invited to sit. While looking at the notes, not at me, she asked me how I was and I explained I was feeling a little low and teary thanks to a virus, on top of everything else. She then asked me how I was getting on with my medication – the dosage had been doubled at my last appointment, and I was struggling with the side-effects. I was told they would calm down after a while – fair enough.

What I really need, however is psychotherapy to help me deal with the underlying trauma. I was originally informed back in June the referral would take up to six months because it is oversubscribed, but this doctor told me it would take up to a year. Naturally, I expressed my frustration – the doctor said I would be better off going private. The same doctors provide private and NHS services, meaning it is likely in their interests to keep the NHS waiting list long. While I said working in the NHS I recognised how silly the system can be, I wasn’t really interested in a political debate.

What I really want is help to get better. She suggested I call the the Samaritans. I didn’t realise they offer counselling support for all sorts of reasons, not just those who are suicidal – but why should patients constantly have to seek their own support, and from so many sources? We deserve consistency of care.

Then I started to feel teary and said how much I miss Hugo. The doctor turned to me and said “God will give you another baby”, and said what happened to me is common. I could tell from her countenance that she meant to be kind, but bringing God into it was wholly inappropriate. If God is so generous with babies, why did my last pregnancy nearly kill me, and my baby die as a result?

Furthermore, what happened to me is not common – HELLP syndrome is, thankfully, very rare, as I told her. She looked at me quizzically and asked what it was, so I told her. She replied asking if that’s what affected Hugo, so I told her that technically yes, but the syndrome affected me meaning Hugo had to be born prematurely, which caused his death. To be fair, she is a psychiatrist and not an obstetrician, meaning not knowing about a very rare pregnancy condition is forgivable – but to so obviously not have not read my notes beforehand is unacceptable. That insensitivity could have been avoided with a quick Google search to learn more about HELLP syndrome.

Then followed a conversation about what could be done to prevent it happening again in another pregnancy – there is nothing that can prevent it – and I was told to ‘keep positive’. Again, this was meant kindly, but how on earth can I ‘keep positive’ about another pregnancy when I have not received adequate support to help me overcome the trauma of the last one?

She retorted by saying that psychiatrists are ‘overwhelmed’ by patients from all specialities, and each specialty should have their own counsellors like, for example, Macmillan do for cancer patients. I agree, but her opinion on that does precisely nothing to help me.

To conclude the appointment, the doctor confirmed that she would try to expedite the psychotherapy appointment, which I thanked her for.

We agreed I would persevere with the medication. I’ve run out of medication of that dosage, so I asked for another prescription – the psychiatrists on my other appointments have done so with no problem. The doctor said my GP had been made aware, so I could get another prescription from them. Yes I could, but as I explained, that would mean making an appointment with them, making another trip, etc etc, – and I was there then. She reluctantly got her prescription pad out of her bag but then hesitated and told me that she would get in trouble for writing the prescription because it would come out of her department’s budget.

I was flabbergasted, and asked her why exactly she felt the need to tell me about her department’s budgetary concerns, which is 100% irrelevant to a patient. In response, she raised her voice and kept  repeating about not wanting to get in trouble , and that I should go to my GP.

It was not like I was asking for something I do not need, or some revolutionary new treatment costing thousands of pounds that would have caused her strife with her manager. Telling me she was unable to give me a prescription on those grounds was spineless and lazy. To raise her voice as well was unacceptable.

At that, being frustrated at the whole appointment being a waste of time I said “For fuck’s sake”, picked up my coat and left, slamming the door as hard as I could behind me. To the best of my knowledge, no attempt was made to follow me to check I was ok.

I was not ok. I was in floods of tears and hyperventilating.

I make no apology for my language. Angry outbursts are a key symptom of PTSD – surely a senior mental health care professional would do everything they could to prevent one by being kind, compassionate and understanding – not arguing with a patient.

I am utterly furious and distraught at the way I was spoken to at the appointment today.

In addition, outside that busy hospital, people paused to gawp at the crazy sobbing woman but not one stopped to check I was ok. Shame on you, shame on you all.

The biggest shame, however, is on the consistent failure to prioritise mental health services. I know the NHS is bursting at the seams, but things have to change – the current situation is intolerable.

While the mental health system in general is in disarray, this issue is specifically with the services provided by SEPT. This post will form the basis of a formal complaint that I am also sending to them today.

Easy and quick access to counselling after baby loss is crucial

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.

Hugo

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.

 

 

Pensive

It’s been a tough week, for a variety of reasons.

Counselling last week was very challenging, because we discussed the day that Hugo died. As expected, recounting that day was very traumatic, and it sent me straight back to those very raw, terrifying emotions. For a few days, I became nearly as withdrawn as I was in the days and weeks immediately after Hugo died.

This reaction underlines the fact that grief is not a linear process. Recovery is a slow, careful, and painful process. That there is no ‘getting better’ in the way that we think about recovering from physical ailments such as a broken leg, even though someone with a broken leg might use similar words to describe that process of recovery. That means it can be difficult for others to fully understand grief.

Wednesday marked six months since Hugo’s birth. A bittersweet day because Hugo was born far too early and because I was seriously ill, but wonderful because our precious boy made it safely into the world and with a chance to fight for his life.

Hugo has now been out of my womb for longer than he was in it.

Cheeky Hugo, kicking away and grabbing his wires.

My empty arms have been aching more than ever this week, with a visceral need to be with my baby. To hold him, to cuddle him, to soothe him, to nurse him, to kiss him. To be his mummy.

The photos of friends’ babies across my social media feeds have intensified that feeling during this difficult week. I have considered hiding their feeds for now, but I have resisted because it would feel like a regression in my progress. I avoid babies in real life, and in the virtual world I have taken to quickly skipping over those photos. I know this avoidance strategy cannot last forever. Hopefully, this too shall pass.

I’ve also been fighting a bit of a grotty coldy virusy thing, one of those bugs that lies you low but without making you properly ill. Not that I want to be properly ill, but it’s frustrating to feel less than 100% physically when there’s also a psychological illness to fight. The coldy virusy thing also means I’ve been to the gym only once this week. When combined with the inclement weather of the past few days it makes things feel a bit more difficult to deal with. A bit of a vicious circle.

Giving Hugo a kiss.

Most of all this week I’ve been pensive. Reflecting a lot.

The scene at the end of the film Saving Private Ryan came to mind this week. It’s where the elderly Private Ryan, in true Spielberg sentimental style visits the grave of Captain Miller (the soldier who led the rescue mission, played by Tom Hanks). Ryan is accompanied by members of his extended family and asks “Have I had a good life?”

He wants to know that his life has been worth the sacrifices made by Miller and the other soldiers who died during the mission.

Of course, it is incomparable circumstances, but it’s the closest way I can think to describe how I feel about what I have been doing during the past few months.

I know I am very lucky to still be here. Rationally, I know Hugo’s death is not my fault, but the sense of mummy guilt that my body’s meltdown necessitated my son’s very premature birth remains. It will probably never completely leave me.

I have had to reflect that I have made progress, however small. Despite becoming withdrawn after last week’s counselling session, I have come back. During that counselling session, I explored some of the feelings of that terrible day that I had shut away. This means I can try to deal with those feelings.

I am still writing. This helps me, and it helps others.

I am sharing my beautiful boy with the world. Hugo is helping others, with his legacy.

My year has turned out in a way I never would have imagined, and not in a good way, for the most part.

However, I hope my efforts will mean that I will be able to reflect that I have had a good life. That I have thrown everything at my second chance at life. That I will not be solely pensive for much longer, but that I will be able to get out there, into life’s full swing.

 

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