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I was invited to speak at Luton & Dunstable University Hospital as part of the 1^st Neonatal Mental Health Awareness Week (15^th – 21^st April) #NICUMHAW. Ironically, it was me that has been made aware! I feel that it is only right to pass on what I learnt and felt, as part of the purpose of the initiative. During my presentation, I shared my journey of mental health around my experience of postnatal illness and subsequent loss of my partner. My books, ‘Eyes without Sparkle – a journey through mental illness’ and ‘Another Twinkle in the Eye – contemplating another pregnancy after a perinatal mental illness’, may offer encouragement and suggestions for families and those who support them. I continued by sharing some of the ways that I use to ensure my mental wellness. I also wanted to encourage the team who work in the unit, that they must look after themselves, so that they can look after others. After my talk I was asked if I would like to look around the unit. I have never been in one and was keen to do so. My emotions have been so raw since. Let me explain why.

The whole process of conception, pregnancy, birth and the postnatal period are a magical, exciting time for the majority of parents and families. If we all decided as a race, that there were too many risks involved, then we would soon become extinct! For some people though, circumstances prevail that result in a journey that is fraught with layers of additional stress, concern and pain. The advancement of science plus medical knowledge means that we now are able to care for and save babies whom, even 10 years ago, would not have lived for more than a few hours.  Sadly, for some, the end result is a baby who does not survive. Others who are born too soon or are very poorly infants, do go on to be healthy and happy babies. I felt privileged to have been given an insight into one of the incredible units within our NHS, that work tirelessly to give every child, every chance of survival.

Let me tell you what I saw. The first room was the Neonatal Intensive Care Unit (NICU). I have been in an adult ICU last year when my brother was recovering post-surgery. It was very cold, with dimmed lighting and busy in that ward. The huge use of machines was so prevalent, along with so many members of the medical team. In NICU, it wasn’t cold – there were so many machines, beeping and whirring away around each of the tiny incubators. So many people around tending to the needs of these tiny, human beings. I was shocked at how many were in there. I estimate about 8 – 10. This photo is from another UK NICU.

I had always though that babies in NICU had their own cubicle or room where their parent could stay at their side. When my baby son was very ill with suspected meningitis when he was 4 months old, as a breast-feeding mother, I was allowed to stay with him the whole 10 days he was a patient. The first few nights I slept on a fold-out bed, the finally moved to a room with a proper bed for me and a cot for him. Having my precious baby with me, was so much better than leaving him. In NICU, there is no space for adult furniture. The whole focus is around the tiny baby and all the necessary equipment.

The next area I was shown was the High Dependency Unit. There were less machines and more space around the incubators in there. One of the healthcare team was tending to a baby whilst she was singing to him. It was so touching. We popped into a side room where a dad was cradling his tiny son. He was excited to tell us that he had been able to feed him with a bottle that day for the first time. This photo, from the Bliss website, shows how tiny the babies can be.

The final area was the Special Care Unit. This was more like a usual hospital ward, with bays of cots and far less machines. Apparently, each stage of movement on the department, is cause for celebration, as the baby begins to thrive increasingly on its own. There were many more parents in this area.

Please take a look at the Bliss charity website for a description of these kinds of facilities. This charity is for babies who are born premature or sick. Tommy’s also provide some helpful information giving insight into facilities for these babies and lots of useful tips for family and friends.

There were other rooms, such as a family space with toys for siblings to play with. Another room had a pull-down bed in it where parents could stay alongside their baby, just before discharge.

The visit made me appreciate some key reasons why mental health challenges are higher for those around babies who need to be in NICU:

1. The shock of an early delivery or having a very ill baby must be so painful physically, emotionally and psychologically. We all have expectations of what the pregnancy, birth, our baby and early postnatal days will be like. Although we know that there is always a risk of complications, no-one would actually put NICU on their plan. To come through a difficult pregnancy and quite likely, a traumatic birth, to then have your baby in a unit like this one, must be horrific. As a parent, your instinct is to care for and protect your child. All you can do in this situation is literally put your trust in the incredible team of healthcare professionals there and pray for a miracle. It must make you feel so powerless and helpless.  What if the mother is also very sick? Imagine the worry of the partner and the rest of the family to have both loved ones critically ill? As grandparents who were expecting a time of joy and excitement, how would you cope with this? What about the existing siblings, who had been looking forward to a baby brother or sister or niece or nephew? How do people respond that had been waiting for the safe arrival of your baby? Is it appropriate to send congratulations cards and gifts when concern is so great? What if English isn’t your first language, and there are also cultural barriers? What if a loved-one is traumatised by something that previously happened in a hospital and makes it impossible for them to visit the baby?   So many emotions for all involved.

2. I imagine that feelings of guilt must be high. Perhaps you would examine every nuance as to why your baby arrived early or was very ill. Was it because you worked too much; drank too much; smoked; was too energetic? Maybe the pregnancy had been unplanned and this was your ‘punishment’. The turmoil of ‘if only’ playing on repeat in your mind, must be so tiring. Within the family dynamics there might be feelings of guilt and blame, that could so easily lead to relationship breakdowns and challenges. At times of stress and worry, it can be a natural response to strike out when we seek answers. We negotiate and barter with ourselves and possibly with any spiritual belief or value. For example, pray to God that if He lets this child live, you will never sin again.

3. You expect that your baby will be always with you. You expect that they will grow and develop in your womb for 9 months. When that time frame is cut short or your full-term baby is so poorly that they need a NICU cot, then separation is inevitable. Oh my – I cannot begin to appreciate how painful that must be for all concerned. Leaving the hospital without your baby must be so tough. It is likely that a room at home will have been prepared for the new infant along with a pram, clothes and toys. I remember how I used to get such pleasure from preparing all of that whilst I was pregnant. To go home without your baby and have the constant worry of how they are doing, must be immense. I imagine that you would want to be at their side all the time, yet the facilities and practicalities make this difficult. For your own sake, as a parent, it is essential that you continue the processes of everyday existence, to eat, sleep, rest, etc. It must be so stressful, as I suspect that your mind and heart will be in NICU, constantly wondering how your baby is thriving – or otherwise. There might be a big distance between home and NICU making travel an issue too.

4. What about the mental health of the infant? We know that it begins in the womb. So when the baby is born prematurely, how is it affected? Bonding and attachment along with the sensory stimulation of their environment is crucial.

5. Financially there may be additional concerns. If the baby arrived before the expected maternity leave, how does that impact on a career and workplace? Can you be expected to work and simply ‘pop-in’ to see your baby in NICU, from time to time? Some mothers may be in deep shock and possibly block out the reality of what is happening. Then they will face the judgement of others for ‘not caring’ when that is the opposite of what is happening. What if, as a healthcare professional, your baby needs to be in NICU? How would that challenge your personal and professional confidence?

6. I was extremely impressed by the team of healthcare professionals who work in the unit. Some of them had been able to attend some of my talk, swapping with others who were needed with the babies. I felt in awe of the roles they have. How phenomenal to help save lives on a daily basis. They work 12-hour shifts. Can you imagine doing your job for 12 hours? Sometimes they do not have chance to take a break because they are so busy. Part of my remit was to remind them that they are far more effective when they look after themselves too. Their mental health must also be stretched. In addition to the long hours, I suspect it must be difficult to ‘switch off’ from the babies in your care, when you are not there. I know that they will be highly skilled, yet there is always the risk of human error or a decision made that does not result in a positive outcome. The responsibility is massive. When a baby is discharged and goes on to grow and develop, the reward must also be massive.

7. The sense of loss surrounds NICU. Loss of what was expected with pregnancy and birth. Loss of how you expected your baby to be and look. Loss of what you expected the milestones to be. Sadly, for some, their baby will not survive, regardless of the utmost care and attention. Their body is simply not formed sufficiently. That fear must be constantly on the mind of all involved whilst hoping for the best outcome. Dare you dare to dream? Do you feel even more guilt if you expect the worse? Do you dare to become even more attached to your vulnerable baby knowing that at any time they may not make it? What if you have a multiple birth and not all survive?

8. How do you adjust to being parents when your baby is finally discharged? It is a huge adjustment when your baby is well. How do you cope with the additional risks of infection, etc.? How do existing children adjust to your attention being so much on the new baby? Whilst in hospital, there will have always been someone to call upon to assist with the care and treatment – then suddenly, it’s just you.? That must be both wonderful – and scary. How can you learn to let others baby-sit for you? I suspect that this is a key time for needing to protect adult mental health.

These are some of the thoughts I’ve had since my visit. I deeply admire the teams involved in the care of these babies. It is only right that we flag up the importance of the mental health of all involved. Of course, the main concerns have to be around the physical aspects of development and treatment of the infant. What we must also be aware of is the impact upon everyone involved for their mental health.

I applaud the initiative to bring this area to the attention of us all. I have been involved with perinatal mental health for many years. I keep learning and like to share my knowledge. A number of years ago, we tended to speak only about the baby blues and postnatal depression. With the tireless work of many, the reality of mental health challenges in pregnancy were highlighted, along with the wider range of postnatal conditions. Consequently, the term ‘perinatal’ is now widely used and accepted. We have increased resources and awareness to help and treat mothers. More research and awareness is finally emerging around the impact on fathers, for example through the work of Mark Williams. So, I truly hope that as a result of #NICUMHAW, we begin as a society to recognise the additional risks to the mental health of all those involved.

Here are some of the figures that have been highlighted this week:

• 79% of parents admitted that they felt their mental health had been affected by the neonatal journey.
• 41% of parents had self-diagnosed their own mental health conditions such as PTSD, Post Traumatic Stress Disorder, anxiety, grief, trauma, OCD, panic disorders etc.
• 40% of grandparents similarly self-diagnosed
• 54% of parents said their older child / children were affected by a neonatal stay
• 46% of parents suffered relationship difficulty as a result of a neonatal journey
• 91% of dads who returned to work when their baby was on the neonatal unit said they had struggled to concentrate
• 20% of mums had taken sick leave on the following their maternity leave
• 27% of mums and 16% of dads who returned to work took time off around certain dates to deal with triggers and anxiety
• 42% of mums and 21% of dads left work altogether to care for their child / children as full-time carers
• 85% of mums and 70% of dads who experienced baby loss on the neonatal unit said they did not receive support around the trauma they faced
• 78% of parents who went on to have further pregnancies felt they were not adequately supported emotionally during the antenatal period
• We asked mums what they felt were the most traumatising elements of the neonatal journey. 78% said separation from their baby, 72% said witnessing traumatic situations (such as witnessing situations which were happening to their baby or a baby in the same room.), 41% said feeding, 24% financial strain, 24% said surgery and 22% said transferring to another hospital.
• We asked dads the same question and they had slight differences in their answers which included 25% said separation from their baby, 42% said witnessing traumatic situations like the mums, 17% said transferring to another hospital

See the full report and survey findings here.

Since my visit to the NICU, I have been feeling so grateful that my son was well-enough not to have needed their support. When he was born, the umbilical cord was wrapped around his neck, and there were concerns for him. Thankfully, he was okay. The insight of having him so poorly a few months later, I do suspect, added to my deteriorating mental health at the time. My sister, Claire, had her little girl Sophie, prematurely. She had developed a rare condition called HELPS syndrome. Thanks to the emergency team at our local hospital, both received excellent care. Sophie was just over 5lbs in weight (below) and didn’t need Special Care.  I saw babies on Thursday we were both heavier, and lighter than she was. As a family, we have been close to needing the facilities of neonatal care. We were blessed.

and now ..            

I can though empathise with the additional needs faced by families around NICU. Any niggles I currently may have are now firmly in perspective. I was undoubtedly moved by what I saw. I know that one of my ways of processing emotive issues, is to write about them. In doing so, I know it helps me – and I hope others. As I traveled back north on the train on Thursday evening, passengers were full of excitement about the Easter weekend. It felt so unfair that other families are currently going through the ordeal of their baby requiring top-level care.

I apologise to anyone whom I know that might have needed the incredible services of our NHS NICUs. If I could have been more sensitive to your needs, I am truly sorry. I know that going forward, this will be an area that I do highlight and will learn more about.

• As a society, let us all be more aware of how vulnerable the families are at this time.
• As healthcare services and providers, ask what your trust or department is doing to support these families.
• I highly recommend that you take a look at https://www.leosneonatal.org/neonatal-mental-health-awareness-week/ for a wealth of information of how we can all make a difference.
• What can you do to highlight this in your area for now – and the event next year?

When I had finished speaking on Thursday, we were joined by a mother and her daughter who was 2 years old, that day. She had been a patient in NICU and initially had a low chance of survival. How wonderful to see her running around clutching her ‘I am 2’ balloon!

To the amazing team at Luton and Dunstable NHS Hospital Trust NICU and the others around the country, I humbly salute you all. To the families and babies in their care, I wish you every good health and happiness. Keep up your incredible role – and reach out for support where you need it. Thank you for allowing me to be a tiny part of  #NICUMHAW.

Elaine 😊