Living with PTSD - Rebecca’s story

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

Outside of the hospital doors everyone else’s life continued. I felt locked in a vacuum of NICU and trauma but in my other life my son was at home and he needed me. So, every day I stopped at the ward exit teetering on the edge, questioning myself: “Can I leave yet? Can I do it? Can I leave my babies?”

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?

There was still so much guilt. I’d worry about the long term impact of my invisible force field. Would it affect my bond with my daughters? I continued to use the protective force field to cope with the other areas of NICU life.

Things can change in an instant in NICU. On a daily basis you are reminded of this. I remember a day that started like any other. Bertie became very unwell and there was a dispute about what to do between the ward sister and the doctor on duty. The concern was that she was showing signs of sepsis. I stepped out of the dispute. I had to trust that the medical staff would get it right.

Later that day, as I fed Amelie, a doctor sat updating records on the ward computer. I watched as she jumped up towards Bertie and shouted for help. I sat there as medical staff surrounded my baby girl’s 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 buried my head in the sand. I called it the ostrich effect.

Five weeks into the girls initial 11 weeks in hospital, I was diagnosed with Post Traumatic Stress Disorder. I received 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.

After their birth on 15 October, Bertie and Etta made it home for Christmas. On 28 December I brought 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 that now we could get on with our lives as a new family of six. That relief would be short-lived.

Within days of coming home, Amelie was back in intensive care in a medically induced coma fighting for her life. After three days in intensive care, Amelie was well enough to be transferred to our local hospital. As we arrived Bertie, who was also ill with paraflu taken by an emergency ambulance to a High Dependency Unit.

When 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. 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. Every time we had a visitor I was braced with anxiety. I didn’t want anyone to touch them and possibly share their germs. It became easier to not have visitors and not to go out.

PTSD made me want to isolate myself and my family. I wanted everything to be perfect for the girls and didn’t want anyone to help with their care. This was mainly related to my fear of other people being near the girls in case they caught germs, but it was also due to my wanting to be their primary carer without interruption.

Meanwhile, Bertie was becoming very ill and needed emergency heart surgery. I cried tears of frustration at having to be hospital mummy again. Bertie was in hospital for a month this time.

It still upsets me now to think she spent too much time on her own. I couldn’t take her sisters into a hospital because of the infection risk. I would look after the children at home until my husband 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.

Shortly after Bertie came home I realised that the trauma had broken part of me. I spoke to other mummies who had experienced NICU. 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.

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.

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 a 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.

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 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 and rightly so. But it’s important to remember that as a parent of a baby in NICU, we suffer too, and it’s 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.

To read more about Rebecca’s story, visit her blog, like her page on Facebook or follow her on Instagram (@mummy_to_triplets_and_bro).

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.