Neonatal Intensive Care – The Cliff Edge

‘Nope. Thanks very much, but I’m alright’. That’s what I said when I was offered a couple more counselling sessions after discharge.  What I was thinking was, ‘Are you kidding?! No way. My 24 weeker is coming home after only 12 weeks in hospital. I’m happy. Everything is perfect. I don’t need this. I don’t need another appointment to go to. I just want to be at home with my baby.’

Having started off with no mental health support at all in the regional NICU for 8 weeks, I was so grateful to meet a wonderful student psychologist during the 4 weeks stay in the next hospital. I didn’t understand how much help she had been in the couple of times we had met. I underestimated the cliff edge I was standing on as we prepared for home.

We had appointments most days of the week. Matthew went from needing to be woken for feeds in hospital to crying all day and night. He had the general restlessness of a baby born extremely prematurely, whose brain is still fighting to develop its nervous system. Matthew endured months of physical suffering each time he fed. After the feeling of guilt that my body had failed to carry him for 9 months my body was now letting dairy and soya proteins into my milk causing an allergic reaction. I felt like I had poisoned him. He had a hole in his heart but I had no monitor to beep every time his heart rate and oxygen saturations dropped. Even though this was no longer happening to a dangerous level, it was so hard to leave the security of knowing the numbers on the monitors behind us in hospital and just relax at home.

Whenever we left the house everyone wanted to comment on how small he was and wanted to know all about him and I told them everything! It was mentally exhausting but I was desperate to talk, even to complete strangers just to sort through our experience in my own mind.

For all those months in hospital and months at home, everyone told me how ‘strong’ I was. I knew I wasn’t.

I was detached from my baby and from my own feelings. I got up and kept going because I had to and because my husband helped me. Without him, my baby and I stayed in my room in the dark. I know now that I was scared to really feel anything. Matthew was still so fragile. He cried all the time and I couldn’t fix it, even though I was supposed to be his mum.

I could pick a fight with my husband even if he had done the dishes, made dinner, hoovered and changed nappies. I was flying in to a rage so intense that I didn’t recognise myself. I would imagine myself dropping my son between his basket and my bed. At the top of the stairs, I would imagine him landing at the bottom. These thoughts made my stomach turn and my body stiffen because the thought that I could harm my baby terrified me. It was a long time before I found out that these thoughts were not uncommon in new mums and were a sign of anxiety.

I found myself in tears on the motorway because an ambulance passed me. Suddenly, I felt like I was back in the ambulance, praying that my contractions would stop and my baby wouldn’t die. I would hold him during the night while he cried and I would cry with him. This was partly my distress at failing to comfort him and partly the guilt I felt because I knew some parents didn’t get to bring their baby home or had many complications.

I felt that I wasn’t good enough to be his mum because I had him early and because he was safer with the nurses in his incubator. I thought it would be better for everyone if I just wasn’t here any more…

It was another few months before I realised that those thoughts were a sign that my mental health was at its lowest point and listened to my husband begging me to see my GP.

When I finally went, I cried harder than I had done in a good while. I had been putting on the brave face for everyone for so long. I was agreeing with them that it was great to have my baby home, he’s a miracle, he’s done so well. That’s what they wanted to hear. They wanted to see me smile after all we had been through, but it was such an effort and it felt like I was following a script each time I put on the act. I felt like a failure.

My GP asked all the right questions. I told her everything and it felt SO GOOD. I asked her ‘What if I take the medication and it doesn’t help me because I haven’t got postnatal depression, I really am just a grumpy ass?!’ It was so hard to accept that I wasn’t ok now that my son was finally home. I was meant to be happy.

Every few weeks I felt like I was going back to square one and each time my medication was increased. Now I can say the lowest days are becoming infrequent. I’m still really anxious. Sometimes when I get a flashback, my hands begin to tremor. When I hold my hand down my arm takes or the shaking. I was told I could have an 8 month wait for counselling on the NHS. That felt like a kick in the chest. I wanted to heal.

Through looking in to it on my own, I made an appointment with a wonderful midwife who went over my notes with me and answered questions. Thankfully my wait for counselling wasn’t 8 months and it’s helping me to understand why the sustained levels of anxiety for all those months have had a lasting impact on me.

On the good days I’m sometimes buzzing to the point that I know if one little thing doesn’t go to plan, I will fall apart. I feel out of control, just like I was when I went in to labour 3 and a half months early, and for the 12 weeks when I would go home and leave my baby for other people to care for him. Some days I’m stuck going over and over those awful few months.

Coming up to his first birthday was tough. I was thinking over his birth daily. I was remembering the emergency buzzer being pressed and hearing ‘Please, please, don’t push until the NICU team get here, they need to help the baby breathe!’ I was dreaming about different points in his hospital stay with him lying on my chest with all his tubes and wires. I thought about parents we met and how they coping with multiple complications a year on, or with the loss of their baby after months in hospital.

I was remembering being told I had to go home despite my baby still being in hospital because I was no longer septic, and not to worry about all my crying- it was ‘JUST’ the day 3 baby blues.

I can’t believe how much has happened in a year. It has been long, terrifying and at times, lonely. His first few months at home are painful to remember because he was so distressed and I felt so distant from him. Coming to accept that I had post natal depression and anxiety made me angry that I lost so many months to enjoy him and bond as a family, all due to my mental health.

Premature babies don’t stop being premature when they reach their due date. Parents of sick and premature babies don’t step on to cloud 9 as soon as their baby is discharged home. There is a a void between hospital and home where we go from being surrounded by nurses, equipment and other parents to just us. It’s scary! When it’s quiet at home with no hospital noise, there is time to think, but no professionals to help rationalise.

I know that my husband was feeling all the worries that I had for Matthew, but he was also worried about me. He remembers the trauma of premature birth and seeing me so unwell. He lifted me out of the shower when he realised I was lying down crying on my first morning home without Matthew. He was holding our baby on a day when he stopped breathing. Dads’ mental health can be too easily overlooked.

Mental health support when sick and premature babies go home needs to be implemented if parents are to be fit to return to work and to enable families to recover and move forward with healthy, happy relationships.

 With huge thanks to Sarah Kiker for sharing her story through neonatal care and beyond so openly as part of Neonatal Mental Health Awareness Week | 15-22 April 2019