Mental Health Matters, Premature Birth

A Hospital Mummy

Following a traumatic arrival at 29 weeks gestation, my triplet girls spent the first 11 weeks of their lives in hospital. They were the longest weeks of my life.

I look back on this time in NICU and wonder how I was able to leave my babies in hospital every night.

To leave my babies meant handing over their primary care to others, sometimes strangers, if I hadn’t met the staff on duty. Handing over control of the care of my babies will remain the most challenging experience of my life. To not be their primary care giver in those precious first weeks really hurt me: it still does.

Being Mummy

So, as their mother, I did the things I could do. I produced my milk for them. I sat for hours on the ward and held them skin to skin whilst hoping my voice would comfort them.

I did all of the things I could to give them comfort and reassurance as a mother does. But then everyday I’d walk out of the door to my other life.

Outside of those hospital doors everyone elses life continued. Meanwhile, I felt locked in a vaccum of NICU and trauma. But in my other life my son was at home and he needed me. So, every day there was the same pattern, me stopping at the ward exit teetering on the edge (pun intended), questioning myself  ‘Can I leave yet? Can I do it? Can I leave my babies?’

The Ostrich Effect

In order to protect my sanity I’d visualise an invisible force field drawing up around me to stop the hurt getting in. And then I’d walk out of the door. If I didn’t use this invisible blanket to protect me from the hurt, then how could I have ever left my babies where they needed to be to get well?

But there was still so much guilt: a mothers perogitive? I’d worry about the long term impact of my invisible force field that I’d developed to enable me to walk off the ward. Would it effect my bond with my daughters? And it wasnt just the walking off the ward when I felt the need to employ my protective force field.

There would be the constant tests on my babies in hospital. We were often advised not to be present as it would be too distressing for us to witness. And so I’d take the advice and sit outside the room and I’d listen to my babies scream. I remember once walking to the end of the corridor and still hearing Amelie scream. Every ounce of maternal instinct would shout at me to go and grab my baby, but at the same time I knew the nurses were right: I didnt want to see my babies in pain. And I’d feel bad, so guilty. There is something about that time of being hospital mummy: let me tell you that there is nothing that would stop me holding any of my babies now if they needed a similar test. But, I guess you do what you need to do to survive at the time. And we need to be kind to ourselves about that.

And then there’d be the moments that every NICU parent dreads: the alarm sounding that is wired to your baby.

Things can change in an instant in NICU. On a daily basis you are reminded of this. From day to day you may receive news about your babies that you dont want to hear.

I remember a day that started like any other on NICU. But then Bertie became very unwell. There was a dispute about what to do with her between the ward sister and the doctor on duty. The concern was that she was showing signs of sepsis: Bertie’s skin was grey. I stepped out of the dispute. I had to trust that the medical staff would get it right.

There were times like this that I felt I wasnt assertive enough. Times I felt I was letting my girls down. But I didnt have the energy to challenge. I was conserving all of the energy I could just to get through the experience whilst I battled with PTSD.  I was also very aware that I didnt want to be ‘that mum’. I wanted the staff to like me so that they would give the girls the best care. It sounds really sad now. That was my mindset, rightly or wrongly.

Later that day, as I fed Amelie, a doctor sat updating records on the ward computer. I don’t remember the sound of Bertie’s alarm. I do remember the alarm in the doctor’s face as she looked up from her computer to Bertie’s cot. I watched as she jumped up towards Bertie and shouted for help. And then I sat there as medical staff surrounded my baby girls cot. Bertie had stopped breathing. I remember pulling up my invisible field around me. I looked straight ahead, I held Amelie close, and I tried to ignore the chaos around me. I couldn’t cope with my fear. I pushed my fear away. I called it the ostrich effect.

That is one example of a bad day on NICU. It was a Friday.  I remember seeing the doctor the following Monday: she told me that she’d thought about Bertie all weekend and was relieved to see her on Monday. And I thought, gosh – was she really that ill? The Ostrich Effect.

Maternal Mental Health

Is it any wonder that NICU mummies can experience challenges to their maternal mental health? There are so many reasons why this might happen.

Five weeks into the girls initial 11 weeks in hospital, I was diagnosed with Post Traumatic Stress Disorder. Primarily, I recieved this diagnosis as a result of the life threatening birth trauma I had experienced. Unfortunately, in the year that followed the girls birth, we were to experience a series of significant health traumas that would leave me emotionally crippled by PTSD.

All I wanted for my girls in those first few weeks was for them to wake up in their own home, away from NICU and the daily tests. For my girls to be with their family ALL of the time. For my girls to go a day without a tube feed or seeing a needle or those awful eye tests.

After their birth on the 15th October, Bertie and Etta made it home for Christmas. On the 28th December, the girls actual 40 week due date, I brought my Amelie home.

I was overwhelmed with relief for my girls that they woke up in their home, not a ward. That my face was the first they saw every morning. I was relieved for me that I was no longer a Hospital Mummy. I was just their mummy and now we could get on with our lives as a new family of six.

That relief would be shortlived.

A Hospital Mummy, Again

Within days of coming home, my Amelie would be back in intensive care in a medically induced coma fighting for her life. And I would be a hospital mummy again.

After 3 days in intensive care, Amelie was well enough to be transferred to our local hospital. As we arrived her sister, Bertie, who was also ill with Paraflu, was deteriorating and was transferred by an emergency ambulance to a High Depency Unit.

Being in hospital this time felt different. I had been exclusively Mummy to my babies at home, and whilst I was still feeling relatively institutionalised, I felt more torn about leaving my babies and handing over their care.

Post Traumatic Stress Disorder

As both girls came home my PTSD was crippling. It was clear from the doctors response that if Amelie hadn’t been in my arms when she had stopped breathing, that we’d have lost her. I was terrified to leave my babies alone. I was terrified that something awful would happen. I would walk into a room and brace myself for what I might find. I was just constantly terrified.

That is the legacy of trauma, something terrible had already happened, so it could happen again.

My life became an overwhelming cycle of trying to keep my children safe. Everytime we had a visitor I braced with anxiety.  I didnt want anyone to touch them and possibly share their germs that had already proven to be too big for my girls and their premature lungs. It became easier to not have visitors, not to go out.

As Mummy to baby triplets and Felix, I was often too busy to think, but the PTSD would manifest itself in flashbacks of the traumas that had occured.

In hindsight, PTSD also made me want to isolate myself and my family. I wanted everything to be perfect for the girls and didnt want anyone to help with their care. This was mainly related to my fear of other people being near the girls incase they caught germs, but it was also due to my wanting to be their primary carer without interuption: I had been hospital Mummy for too long, I just wanted my babies all to myself where I was the one to make decisions about their care. Mummy knows best!

Meanwhile, Bertie was becoming very ill and starting to deteriorate. Within a few weeks we would be back in intensive care and Bertie would need emergency heart surgery. I couldnt bear it. I just wanted my babies to experience being at home without pain. I cried tears of frustration at having to be hospital Mummy again. Bertie was in hosptial for a month this time.

It still upsets me now to think she spent too much time on her own without family by her side. After what had happened just weeks before, I couldnt take her sisters into a hospital because of the infection risk. This meant that I would look after the children at home until David came home from work, and then I’d race out to the hospital at night. I tried to organise a cuddle rota for her with trusted friends, or to get to her in the day when I could, but it was never enough.

Then Bertie came home. Bertie was pink and well. Life got easier.

Shortly after Bertie came home,  Felix and the girls went down one by one, over a period of 5 weeks, with the most horrendous chicken pox, but I could deal with it. It wasn’t life threatening: it was ‘normal’ illness stuff.

I dared to believe that we could start to live a normal life, as normal as life can be with triplets and bro.

However, during this period, I realised that the trauma had broken part of me: I needed help to heal. I spoke to other mummies who had experienced NICU. Based on their responses regarding the long term implications on their mental health, I knew I had to be pro-active in getting the right help to heal the broken part of me so I didn’t suffer later.

Support

I accessed the most amazing support from a local charity called Acacia, who offered a befriending service and weekly Cognitive Behavioural Therapy group sessions. Acacia also helped me to access EMDR therapy, which was available through the NHS.

I had been advised that the therapy might initially make things harder as I would be revisiting memories that I’d done my best to hide from. So, on medical advice I started medication to aid the management of my fear and anxiety. I saw medication very much as a plaster to protect the wound, whilst I did the cognitive work I needed to so that I could heal the wound. This combined approach helped me enormously, and I learnt life skills that I will carry with me always.

Meanwhile, I learnt that when we suffer a trauma, it is too painful for our brain to process. As such we try and push the memories away and the memory remains unprocessed. Rather than processing the memory as our brain normally would, the memory can become stuck in a kind of trauma purgatory: an unhelpful memory loop that can manifest itself through invasive thoughts and terrifying flashbacks, which we push away. And so a negative cycle ensues.

EMDR therapy helped me to process the trauma in a safe environment, and in turn file them away so they are no longer stuck in the continual loop. The memories will never be pleasant, but they are no longer too hot to touch. They no longer intrude my thoughts and reduce me to tears in an instant. The burden of constant terror has left me as I processed the trauma. I feel more settled and able to look forward instead of being held ransom to the past.

As I neared the end of my EMDR sessions,  we found the lump in Amelie’s neck. It became life threatening as it was compromising her airway.  I was terrified once more, but better able to manage my feelings.

Amelie had biopsy surgery in January of this year and two weeks later we were told that the lump was benign.

Finding Our Rainbow

Since then, as a family we have gone from strength to strength. In April, the girls were safe to go out as RSV season ended and everyone is doing well. Bertie still has a hole in her heart and this will require surgery in a couple of years, but we will deal with it when it happens.

I’ve learnt how short life can be and time spent worrying about what has happened or could happen is time taken away from focussing on all the good we have in our lives today.

That said, I don’t know how I’d feel now if I hadn’t sought the help that I did. Looking after our mental health is so important. If trauma is left unprocessed it can continue to hurt us and impact negatively on our lives.

As such I feel passionately about raising awareness of EMDR and CBT therapy so that other parents who have experienced similar trauma know that there is help available if they want it.

Nobody wants to see their baby suffer in NICU. As parents we will always prioritise the care of our babies, rightly so. But its important to remember that as a parent of a baby in NICU, we suffer too, and its so important to just check in with ourselves and think ‘Do I need some help to process this?’

I did, and right now I feel like I’m juggling rainbows.

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