I used to think – and I guess a part of me still does – that I cannot make a difference. Was it laziness, ignorance? I looked at the greats: Nelson Mandela, the leading ladies of the Suffragette movement and even Maggy Thatcher herself. I cannot live up to that, so why bother? But then something happened to me, something I wasn’t planning on, but nevertheless it is something I gained. It was the new-found fierceness that becoming a mother gives you. I would never describe myself as a confident person; I would always make a joke and deflect the issue to someone else. Not anymore, now I am a mum on a mission. Let me start by explaining why…
Becoming a NICU Parent
Like more than 90,000 other families, I became a resident of NICU. My son was born with an undetected CHD called Tetralogy of Fallot and suffered a Neo Natal Stroke. Elijah spent nine days in NICU and had open heart surgery at Great Ormond Street at 6 months old. I will fast forward to say Elijah is a happy and healthy little toddler who is causing mischief where ever he goes. But the story doesn’t just end there—it doesn’t end when you bring a NICU baby home. Most will think that having a baby in NICU is hard, but now that they are home everything is…better, isn’t it? NO. You will be under the NICU Outreach team, there will be numerous follow ups, hospital appointments and development checks. I could live with that. What I couldn’t live with? My own mental health after I brought Elijah home.
Going to a Dark Place
Those nine days impacted on me in a way I would never have imagined possible. I went somewhere that I never want to go to again. It wasn’t a quick fix to sort me out – it took 18 months for me to even get help. I had severe flashbacks, I could hear the machines bleeping, reliving being taken into a room to be told our son may be disabled. The smell of the hand sanitiser as you enter the NICU and sitting in a room on the maternity ward without my baby. Leaving with a car seat that didn’t have a baby in it, but my wash bag. I resented everyone that went into have a baby and came home. I internalised all the feelings of hate, guilt, anger, sorrow and controlled them by abusing medication and not eating. My relationships became strained. Slowly, the people who were there for me at the start melted away and only my true friends and family remained. I realised I must have bored them with my self-indulgence. Those friends remain true in the fact that they put up with my self-pity, the fact that if you asked me I couldn’t tell you a single thing that happened in their lives in six months. As weeks went, on Elijah went from strength to strength, but I couldn’t be happy. I look back on the first months of motherhood and see them as tainted. I was not coping – I was depressed and in need of help.
As aforementioned, we had many follow ups at the hospital, home visits and consultant appointments. These were mainly for Elijah, but no one was there to follow up on us as parents – a NICU parent. It took me a long time to realise this and I fought it at every corner, for months I denied there was even anything wrong with Elijah and they had it wrong. I wouldn’t admit it to anyone, I couldn’t cope with their pity. I didn’t want it. I wanted to be a normal mum.
Mental Health Risks for NICU Parents
Now Elijah is 2 years old and I can say with pride I am not a normal mum. I am a NICU Mum. There is a difference between us and a non-NICU family. I believe the aftercare of when you are discharged from the hospital should be different to reflect this. In a 2015 study of 115 new mothers in NICU, a staggering 42% showed signs of Post Natal Depression and 30% displayed symptoms of Post-Traumatic Stress Disorder. I became acquainted with this illness myself. NICU mums are at a higher risk of developing PND and other mood disorders than any others. We all know that 1 in 4 of us will suffer from a mental illness; the chance of a NICU parent suffering rises dramatically. So then why if we know this, are we doing nothing about it? Why are the recommendations from those who do understand such as Bliss being ignored? NICU parents are being left to just get on with it. They are handed a leaflet about a Facebook support group and sent on their way. You are not screened or even seen by a mental health professional on admission, on discharge or when you are home.
Lack of Support for NICU Parents
I ask myself why I didn’t receive any aftercare. After two years, I am still waiting for a call from the health visitor to check that I am okay and Elijah has had his operation! This is where we could argue that you should have gotten yourself help. Yes, I could have, but I was currently busy embracing the darkness that was consuming me and dragging me further and further into its grips. I was doing what I could just to get through the day, nevermind thinking of the future and myself. But now I ask, is it funding? Lack of resources? Policy? I guess I would like answers in why I was failed and left to my own devices to become mentally ill. Yes, as mentioned I could have done something myself, a rational and well person can say that, but I was in no mind to have considered this. NICU parents are being severely let down. It is only after I have become well, that I have researched and seen the lack of care we are NOT receiving.
It is shocking to say that 41% of neo natal units do not have access to a trained mental health worker, and that in 30% of units the parents advised that they had no access to any psychological support at all. I don’t think the effect can be measured accurately on the families that are living it. How many mothers and fathers have a mental breakdown? Feel they have no choice but to leave? Or worse, do something to themselves that cannot be reversed. After all, having a baby in NICU is likely to be the worst time of your life. Being so helpless while you stand and watch your baby fight for his life. To battle with demons you have never experienced; the guilt this was your fault; that you didn’t grow your baby properly; that your delivery caused this; the resentment to others; the feeling of utter despair – where is the support? The help? The coping strategies? After all, isn’t it the norm that after a traumatic event victims are offered counselling? So where is ours? I was referred to for counselling and sat on a waiting list for two months even though I was considered a ‘priority.’ How many other parents that were on the list needed actual and specialised help? That could have been avoided if the mental health care for NICU parents was made accessible and present in each hospital. Are those who suffer a bereavement in NICU also being cast aside and left to get on it with?
I believe one simple thing could have potentially saved me form getting so far into mental illness that I was no longer myself: someone that was trained in the mental health professions—even just a medical professional—to come and see me and ask if I was okay. It would have been quite clear to them I was not. The way I spoke, the way I carried myself, the fact I lost all my baby weight through eating as little as I could and substituted meals with any pills I could get my hands on. Just to shut out the flashbacks, the worry, the guilt and to feel okay. Someone to put me in touch with someone who has been through this, to tell me what I was feeling was normal. That it was going to be hard but eventually as time went on, it would get better and can begin to move on. Since connecting with other NICU and CHD parents I realised it was okay to have these feelings. I have now become a mentor for other NICU mums who chose to contact me.
Becoming a Voice for NICU Parents
This is where I have vowed to make a difference. I am a voice of many NICU parents. I have told my story many times and will continue to do so. I will keep working until no other NICU family has to face the lack of care that I did, that thousands of other families did as well.
I will make no disguise of my story or the success on the blog – it was built on having a baby in NICU. Some could say that I am selling our story to better ourselves and to benefit from it. I am not, and if you think that you are sorely mistaken. I donate a percentage from each item of my online store to Bliss. I am telling you my story to raise awareness about the lack of mental health care there is for NICU parents and to give you some idea of the devastating effect it can have. I will endeavour to fight for change, to campaign for reform in hope that it helps future NICU parents and improve the NICU experience for all. I will sing my story, I will tweet celebrities relentlessly until they share it, I will barrage my MP and I will shout it from the rooftops, but I will not stop telling it until something has been done.
If you would like to help change this and call for reform, please sign the petition created by Little Miracles.
Latest posts by Vicki Moore (see all)
- Mum on a Mission: My Fight for NICU Parents’ Mental Health Support - November 15, 2016