‘We put mental health too far down our list of priorities in neonatal care’ – Mel’s story

I began having contractions and bleeding at 23+4 weeks so I rang the hospital and was told to go straight to the labour suite. That in itself was an enormous shock. Why would I be going there so soon?

At the hospital, a neonatal nurse came to speak with us, and showed us some Bliss leaflets. She explained what happens when a baby is born early, and said that doctors are not always able to save your child.

Things calmed down for a couple of days and I was moved to a side room on the antenatal ward. The morning after being transferred I went into the bathroom thinking I was passing a blood clot. What I saw instead was Amaya’s head.

Calmly, I stood up and caught her; all 1lb 6oz of her. She was moving like a bird and I didn’t know how to hold her. Somehow I managed to open the bathroom door and hit the emergency button. At the time my husband was at home getting our eldest daughter, Tahlia, ready for school. None of us knew how our lives were about to change forever.

The doctors said Amaya was breathing on her own and they would do all they could. They took her up to the neonatal unit. I was rushed into theatre with a stubborn placenta, which had partly ruptured. I thought we were both going to die.

During recovery my husband arrived, and we were greeted by the neonatal family sister, who was wonderful and gave us a lot of information. She also had a photo of Amaya for us. I look at that photo every day and realise how blessed we are, even though we have all been through so much.

We spent the next 19 weeks in neonatal. I also had a lot of recovering to do. It took several months before I was physically well.

I still remember when I was wheeled down to see Amaya for the first time. The heat, the beeping of alarms, the smell, the number of doctors needing us to fill out forms and answer questions, the sight of our tiny girl in the incubator- no amount of words or leaflets could have prepared us for that.

When you become a parent, there is so much that is beyond your control, but this was different to last time. Expressing every three hours wore me down, physically and mentally. I felt unwell and in shock, but had to pull myself together to express regularly. Expressing for a child you are unable to hold is unbearable at times. We didn’t hold her until she was five weeks old. I struggled with attachment for quite some time. Yes, I loved her, but there wasn’t the same instant bond I had with Tahlia.

My husband and I didn’t have time to ourselves to be able to talk to each other about what was happening. There was no time to process it all because there was always something new happening or Amaya having an ‘episode’ where her SATS would drop dramatically. We also had to try to keep things ‘normal’ for Tahlia.

After two days of this, I felt a strong urge to either curl up in a ball, or run away and not have to face life as it was. I told one of the midwives I felt like jumping out of the window. I don’t think I would have done it, but I felt lost, lonely and distraught. Things became worse as Amaya deteriorated and it seemed likely we were going to lose her.

One of the neonatal nurses had recognised I needed help and asked for the midwives to refer me to their support services. I didn’t fit within the criteria of someone who needed help though because I hadn’t jumped out of that window and I hadn’t lost a baby. This is not a criticism of the nursing staff, but an indication of how resources are overstretched and humans then have to make the difficult decision of prioritising and deciding whose needs are greatest.

The neonatal team was incredible and looked after us as a family. They were quick to recognise when any of us was in need of extra support.

I was eventually seen by the bereavement counsellor on neonatal. She was able to sit with me and listen. She was able to find some support within the hospital too. Again, due to lack of funding, this was for a limited amount of time, but the staff on neonatal knew I needed to be able to talk to someone.

Six weeks after Amaya was born, I wobbled very badly. I began to suffer from severe anxiety attacks, thinking I was going to die, not wanting to move from my bed as it was the only place I felt safe. I didn’t want to set foot in the hospital.

I was referred by my GP to the psychiatric unit, and spent many sessions there with a psychiatrist and a psychologist. I was also given medication. This was a free service within the hospital which could be accessed by anyone who had a baby up to the age of one.

I was diagnosed with post-traumatic stress disorder, but there was no time to deal with what had happened, because every day brought with it new challenges.

Life beyond neonatal has been very hard, and the impact of having a baby in neonatal is long lasting. Amaya has long-term disabilities, and has been in hospital for more than half of her life. As I type this she is in intensive care again with a respiratory virus.

I am guilty of saying: “Well I know many people are in worse situations.” This is where I should tell myself not to minimise the effect this has had on all of us.

I am still on medication and still have flashbacks and panic attacks. Until recently I had a counsellor that I saw through self-referral. He has moved away now. I should carry on with a new one, but I am not ready to. It has slipped from my priorities, because of all the medical issues Amaya has. I feel there are times I don’t do ‘mummy’ things, but all the medical things instead. I’m so busy that I feel as though I neglect Tahlia in many ways, and she has had a lot to deal with.

No one is able to look after themselves properly when on the neonatal unit. Although we do sometimes remember to eat, to sleep, to pop home and feed the cats, pay the bills, put fuel in the car or pick another child up from school. If we didn’t do these things we would soon notice the consequences of a lack of action. However, at what point do any of us consider the effects to our mental health, and put things in place to take care of that? When is there time to look after it?

When our mental health is affected, this impacts all other aspects of our health and well-being, and our ability to function properly. I feel we put mental health too far down in our list of priorities, yet we need to put it to the top.

Did you find this story helpful? Listen to Mel talk more about her experience in our podcast – NICU, SCBU and you. You can also find more information and support on this page, including how you might be feeling, what support you can find and how to support someone else.