Whilst researching this post I came across the statistic that approximately 1 in 4 people in the UK will experience a mental health problem each year. Since 2016 I have been one of the 1 in 4 as I struggled with being a NICU mummy and the aftermath of my daughter NICU and subsequent hospital stays and so this topic during #worldmentalhealthday is very close to my heart.
Now that I am feeling better I have been looking into how other NICU mummies have felt and I have started to think that the NHS may have failed me on this occasion. Now don’t get me wrong I think that the NHS is phenomenal and without their expert care and quick diagnosis my daughter simply would not be here. I will always be grateful and amazed by the outstanding medical care and support that we received from the staff in the NICU at St Georges. However, there is a flaw in the care provided in the NICU and that is provision for the parent’s mental health.
The trauma experienced within the NICU is almost indescribable. Leaving your baby every night despite not wanting to and having to go home and try to sleep is heart breaking. Never knowing what the news will be in the morning is so stressful. I cannot explain how much I hated making the early morning phone call to the NICU to check how she was and how fearful I was every night going to bed in case they called me. The beeping machines, the endless hand washing, the inability to care for your baby and the fear about what will happen next are all traumatic. The trauma is enhanced by witnessing the tragedies around you, seeing other babies struggling and their parents be broken. I still find it hard to think about that time and I feel like I shut down as a way of coping and getting through it. After my daughter was able to come home we had to make 3 return visits to PICU as she had to have operations and the beeping of the machines was there again.
She has ongoing issues with a narrowed airway and so each autumn we are battered by croup and we have to head to A&E typically several times each Winter. Last year we were blue lighted and they immediately attached her to monitors and so the beeping started again and I freaked out. I thought I was going to be sick or pass out as it just made it all rush back; all the fear, all the ups and downs and the reality that me might lose her. A doctor noticed and asked what was wrong. All I could get out was ‘the beeping, I can’t stand the beeping’. The monitors were turned onto silent and immediately my heart rate went back to normal. She was fine after getting the drug that helps reduce the swelling in her throat, but it got me thinking about why I had had such an extreme reaction….
ASD AND PTSD
My research into this showed that over half of parents who have experienced having a baby in the NICU will suffer with ASD or PTSD. I am not sure whether I have been struggling with PTSD, but many of the symptoms are certainly things that I recognise and this is where I think I was failed as no one picked up on this. When I first presented to my doctor with serious levels of anxiety and the inability to stop crying as well a constant fear that something was about to happen to the children or me my twins were just over 12 months of age. I was really out of the danger zone for Post Partum Depression, but clearly something was going on.
My doctor listened, offered drugs, was kind and referred me for CBT. I went to these group sessions, but I just felt like the other people in the group weren’t really experiencing anxiety in the same way as I was. Many of them were in a far worse state than me, but it was different as for them it was about what might happen and whilst that was an issue it was also about memories. About what had already happened…
It was the thoughts of what had happened that drove and exacerbated my anxiety. Many of the tools that they recommended in the group didn’t seem appropriate to me. I didn’t understand why this didn’t seem to be working for me. Over time things have gotten much better and recently I felt like a cloud lifted. I can’t explain it, but it was like I had finally dealt with the trauma and moved through it. I am not going to say that I am calm when her breathing issues start as I am not I can still feel the anxiety rising, but I don’t feel the same intensity of fear when I think about the past. I often feel sad if I think about it, but I no longer feel guilty for not being able to help her and for being a less than mummy to both her and her sister at the beginning of their lives. I have since discovered that there is specific trauma related CBT and I think that this may have helped, but no one made any connection between the NICU and subsequent PICU stays and my subsequent anxiety and depression.
A CHANGE IS NEEDED
It is amazing that the medical profession are on the look out for post natal depression symptoms, but I would like to see a change. This is not the only issue that new parents can face. I would like to see those who are in the NICU receive access to trauma related support as a standard. My daughter does not remember her start to life, but I will never forget it. I know how lucky I am that I have four healthy and happy children and I know that to have my twins make it to 37 weeks is fantastic for both of them so again I feel really lucky, but I wish that I could get back the time I feel like I lost where I could barely see straight for worrying all the time. I think that NICU affects everyone differently, but it for sure affects you and so I strongly believe that a NICU mummy needs to be aware that just because when she leaves she feels ok, even feels great because the baby is home this may not last. I stayed fairly in control until my daughter was completely discharged at around 12 months and it was then and only then that I began to process the trauma and ultimately deal with it.
Tommys have a Well Being Plan that is endorsed by NICE which women can use to help them think through and plan for their well being and I would love to see this being used by health visitors when they visit a NICU mummy. If you are struggling with any aspect of your mental health the best place to start is your GP.
As for me, I still struggle with anxiety related to the health and what could happen. The majority of the time I am able to bat away the negative thoughts these days and don’t descend into full panic, but sometimes it is still a struggle and I am brought (in my mind) right back to my baby unable to breathe for herself. In the long run I know I will be fine and that she will grow so much that her narrowed airway won’t be an issue any longer and until then I just need to keep talking myself back in from my anxiety filled ledge (metaphorical ledge btw)