NICU - A different warzone

This blog post goes out to all parents and NICU warriors – whether for 1 minute or 100 days (or longer), I salute you. September is NICU awareness month. While most people may recognise the abbreviation ‘NICU’, it stands for Neonatal Intensive Care Unit – a special oxymoron place where if you find yourself there – you are both grateful to be there but also wish you weren’t…

Why this blog post? Well, firstly, I’m a NICU mum. I will identify as this until the day my time is up. My time in the NICU with my baby changed everything about me (as I’ll detail later). Secondly, parents are inducted into the NICU club every day. Finally – more and more babies are being admitted to NICUs than ever before[1], so NICU awareness is not only just a ‘thing’, it’s important. So I’m going to be talking all things NICU so that we may all have a bit more understanding of this out of world place.

First up, some stark NICU facts:

  • Babies of all sizes and gestations are in the NICU. Unfortunately, there’s no ‘safe zone’ in pregnancy whereby you are guaranteed to avoid the NICU

  • Around 78 babies in every 1000 born will need to be admitted to NICU1, but of course this will vary from hospital to hospital

  • You might think that most babies in NICU are tiny, sick, premature infants, but in fact, normal weight, term babies make up almost half of admissions1

  • In Australia, 16% of babies are admitted to a NICU after birth[2]

  • NICU parents are vastly more at risk of serious mental health disorders than parents of healthy, term babies. Around 40% of NICU mamas score highly on postpartum depression screening up to one month after birth, half of NICU mamas are at risk of PTSD (posttraumatic stress disorder), whilst 23% meet the criteria for a PTSD diagnosis[3]

Despite this, NICU units are enormously underresourced to screen and support parents with babies in the NICU…read on to find out more and hear from two amazing NICU mamas!

 

Who’s at risk

 

Sometimes a NICU admission can’t be predicted, and sometimes it is expected. For example, premature babies, or babies who might be expected to be born premature (such as twins, triplets etc) are usually admitted to the NICU, but this can also depend on how early the baby has been born. Likewise, babies who will need additional care after birth will probably be admitted – and this might include babies with known problems (such as heart defects and so on) – but we can’t always predict this. Sometimes, a woman experiences complications in pregnancy that may increase the risk of the baby needing NICU care. These complications commonly are diabetes, high blood pressure, premature breaking of the waters/premature labour (before 37 weeks), bleeding and placental issues. Complications in labour can also contribute, such as when the baby experiences distress during labour (or subsequent distress/assistance after birth) or when mother or baby is suspected to have an infection during birth[4].

 

Reduce your baby’s risk of needing the NICU

 

It goes without saying that adequate care in pregnancy is an essential step in reducing the chance of a NICU admission. Having regular pregnancy check-ups and following recommendations mean you are having care that is preventative of some complications (such as the complications above) that can contribute to NICU risk, and it is more likely they will be detected and monitored adequately if they do occur.

Breastfeeding, skin-to-skin and rooming in with your baby may help avoid the NICU, depending on your baby’s circumstances. Research shows that these practices can contribute to your baby’s overall health, reduce risks of certain conditions that may require NICU care, and reduce the likelihood of separation[4].

Why is the NICU such a big deal?

 

When a baby is in the NICU, it is separated from its mother/parents. This has a range of physical and emotional impacts, as well as disrupting the normal processes that occur after birth. Some of the biggest concerns are the impact on the bonding between mother and baby, the impact on parental mental health, the impact on breastfeeding and related longer-term issues for both mother and baby[5].

Mandi, mama to NICU warrior Haven (more of their remarkable journey below) is also an Afghanistan war veteran. She likens the NICU to a ‘warzone’, and is only too aware of the effects of this environment on new parents. Mandi spent almost 9 months by her son’s side in NICU, but she says it doesn’t matter whether you are in the NICU for one day, or one month (or longer) – trauma can happen in only a short amount of time.

“Like for soldiers, it doesn’t matter if you fight in a war for one day, or if you have multiple deployments – the damage is not time dependent.” Mandi says that while parents are grateful to have the specialised care of the NICU for their babies, it is stressful to watch your baby in that environment, and says in hindsight, she feels that she was naive about the NICU during pregnancy (“I thought it was a place for cute, tiny babies”) and also the conditions that lead to her son being born prematurely and needing NICU care.

NICU Mamas and their warriors

 

These mamas are truly unsung heroes in my eyes. We all have our individual parenting battles and struggles, that’s for sure, but NICU parents face both a public and private battle, often right from the beginning of meeting their baby (public because they must undergo this under the watchful eyes of nurses, midwives, doctors and other NICU staff; private because of the intense emotional turmoil and thoughts that they often don’t verbalise or show externally).

Morwenna is quite literally a supermum – she is mum to 7 babies here on earth, and 1 special star in Heaven. Four of Morwenna’s bubs have arrived prematurely, including her rainbow twins, and hence she has found herself in the NICU with each of these four babes.

“My first 3 babies were born on time, so with my 4th I certainly wasn’t expecting anything different. However, I had been monitored for decreased movements with this baby, and at 34 weeks my waters broke unexpectedly, and baby Taite was born less than one hour later! With my next pregnancy, the baby was breech, and again my waters broke at 34 weeks. I had to have a caesarean section a few hours later because Indi was breech.”
“We sadly had a stillbirth with my next pregnancy, and then found out I was pregnant with twins a few months later. It was such a mix of emotions and I knew with twins they would likely come early and possibly need the NICU. I just didn’t expect them to come early enough that I would need to be transferred to a different hospital further away from home! Bodhi and Layla were born at 31 weeks and so it was yet another learning curve to juggle two babies in the NICU and split my time with them”. Read about Bodhi and Layla's arrival here!

Morwenna with her newborn rainbow twins, Bodhi and Layla

Mandi is another NICU mama with a remarkable story. She is mama to gorgeous baby Haven, who was born on New Years’ Day weighing only 410g (less than 1 pound) at just shy of 26 weeks’ gestation. Haven spent almost his first 9 months in the NICU battling for his life. Mandi is truly admirable – she is an Afghanistan war veteran who has had to deal with the physical and emotional impacts of war on her return home, and has then watched her son in a fight for his life in the NICU for 241 days (Mandi has beautifully documented Haven’s journey here).

Mandi and Haven when he was 15 days old!

Mandi articulates perfectly the common thoughts and emotions of the NICU parent: “guilt and shame are both valid and overwhelming emotions. Guilt that you are somehow responsible, you failed. Shame that it isn’t ‘normal’. You’re not worthy. I didn’t have a normal birth, in fact I had a classical c-section. I didn’t get to see my baby until 24 hours later, and I didn’t hold him until he was 15 days old”.

Mandi also acknowledges the ‘loss’ or grief reaction that NICU parents face – grieving the loss of experiences that normal parents have. “I didn’t get to hear his first cry. I didn’t get a baby shower. I didn’t get to pack my bag, or celebrate, or have beautiful belly pictures or ultrasound images. I wasn’t the first to hold him. I had to watch him grow inside a box and I had to ask permission to touch or hold him”.

Morwenna speaks about the same difficulties and challenges of having a baby in the NICU. The hardest part, she says, is letting other people care for your baby, and having to follow ‘rules’ – the policies and practices of the NICU unit.
“Then you are discharged and your heart breaks once again as you leave your baby behind, and then you must do this every day over and over until they can come home”.

NICU Awareness and Change
 

This raises a big problem with the way NICU units operate currently. I am sure there are some really good NICUs out there, but in the majority of cases, design and care of the NICU mean the parents are less supported than they should be. The focus is almost solely on the baby, which is of course warranted, but in an ideal world the parents should be seen as an extension of the baby. In fact, I’d love it if we could rename the units to something involving the word ‘family’ (like Neonatal & Family Intensive Care Unit, for example). The parents are crucial to the baby’s wellbeing, and for this reason they also need physical and emotional care in the NICU.

Let me elaborate on this. We know that a baby’s attachment to his parents/carers is important, and that babies need to develop a normal, secure attachment with their carers. A disrupted attachment, or bonding, can lead to intense distress for the baby, and longer term issues with behaviour, social development, interaction and intelligent. However, we also know that mental health disorders have a huge impact on bonding and attachment (not to mention confidence and parenting!), and if we know that the chance of mental health disorders is elevated in NICU parents, then screening and treatment of this should be routine in NICUs. Sadly, it is not. NICUs may have access to social workers or other support staff, but they do not routinely have mental health workers and counsellors. Bearing in mind that many NICU parents have experienced traumatic events in pregnancy or birth (read my post about this here), we are not supporting their return to good mental health, or a good start to parenting and enjoying this new role.

Here’s an extreme example of the negligence of the parent in the NICU:

Two days after my baby had transferred to another hospital, I broke down. It was 8 days after the end of an extremely traumatic pregnancy (my full story is here). I was just beginning to come out of that fog, and acknowledge everything I'd been through, only to have to survive the NICU experience. It was Saturday night, I was facing another night at home without my baby, two lonely middle-of-the-night pumping sessions, I was feeling like my baby was all alone in her cubicle when I left her. I was truly heartbroken, and I began to sob. Well, not just sob, I full on wailed. The grief just left me and poured out of me. The whole NICU unit was able to hear me. Soon, a doctor walked in and asked me what was wrong (*eye roll Captain Obvious!*). I tried to explain, and she offered me a multitude of referrals for support, all of which I accepted. None of these eventuated. Either the referral was not completed, it was lost in translation, or never followed up. Consequently I battled on, thinking that my feelings mustn’t be that bad if no one was concerned, and unfortunately this culminated in almost a complete mental health breakdown 6 weeks later (completely preventable).

Another point – for the discharged Mama, she may spend the majority of her day at her baby’s bedside (if not, it’s because she can’t make it in/has other children…another issue in itself). She has to pay the exorbitant hospital parking fees day after day, she’s not allowed to bring her own food in because it’s an infection control hazard, so she has to spend more money and time away from her baby on the low-nutrient hospital cafeteria food (because this is the closest and quickest option). This is the food that must sustain her while she pumps the liquid gold for her baby, while she fights back tears, while she advocates for her baby’s health, while she listens to the specialists about their care and management of her baby. At the very least, NICUs need a redesign to be family friendly. They need to provide a safe, holistic, healthy environment for mothers to mother even when their babies need additional care.

Most NICUs are very good at encouraging the parents to be involved in the care of their baby – after all, when the baby eventually goes home, the parents need to be comfortable and confident in attending to his needs. However, one thing I struggled with was the frequent comments, actions or observations from NICU staff that implied I perhaps wasn’t doing the best job, or that were some things I wasn’t doing right.
During handover: “Emilia has been out of her incubator a lot today, she probably should be in there more” (with a side eye to me, implying I’d cuddled her too much”.
During shift: “What has her temperature been?” I responded that it was stable as previously. “That can’t be the case, she is too tiny to maintain that temperature, I will repeat it now” (…and disturb her unnecessarily, I thought).

However, it was the comment of one nurse that once single-handedly turned my day around. She had clearly observed my mental health space, and my fear and how it was affecting my interaction with my baby. Incredibly gently, with the caring touch of a mother, she said “Emilia is not sick, Helen, she’s just little”. To that nurse, I say, you have no idea how much that comment helped me, and has stayed with me. (You can read my whole story here, and more about health professional communication skills here).

 

Coping With the NICU

 

This section may help you if you know you might be experiencing a NICU journey when bub arrives, or if you are currently in the NICU. It may be useful to you as well for awareness of the NICU experience should your bub require extra care unexpectedly. If you're not a NICU parent, but know someone who is or has been, click here for some practical and supportive ways you can help over the journey.

You might think that care of your baby has been taken out of your hands if your bub is in the NICU, but in reality, you can and should still do plenty for them. One of the best things (and super easy!) is a cuddle – skin-to-skin, or kangaroo care as it’s called in the NICU. Many parents are too frightened to touch their baby, let alone hold them, for fear of disturbing them – but in actual fact, kangaroo care is well documented to stabilise them! Yes – nesting them against your warm skin, listening to your gentle breaths and heart beat will calm them, regulate their temperature and blood sugar, normalise their heart beat, breathing and oxygenation. It’s also a great support for breastfeeding, reducing stress (for bub and parent) and improves your confidence in handling and caring for your baby[6]. So definitely start with this, and most babies can do this, in fact the Royal Children’s Hospital lists only very unstable babies as those who are (at least temporarily) unsuitable for kangaroo care[7]

My own recommendations for coping would be:

  • Find your NICU safety net/village. Mine was my fabulous OB and the tertiary hospital where I delivered Emilia. I was completely comfortable with the care and facilities, and I felt safe. This contributed though to me emotional decline when we were transferred closer to home, and I wish I’d built up a village at home!

  • Be prepared to go full MamaBear! This means you fight and advocate for your baby and you don’t care how you achieve what you need. If it doesn’t feel right, you push back until it does feel right, or you get what you want. In my experience, this meant fighting the paediatricians on their ridiculous discharge criteria based on numbers and not the patient! Eventually, 2 senior nurses challenged them too and we were allowed home, leading me to point 3:

  • Find a good nurse or paediatrician who supports you and cling to them!

Morwenna also has this advice for parents. “Let yourself cry, let yourself feel sad, mourn the loss of what should have been. Sometimes you need to push a little bit to get things moving and get baby home quicker but it’s a very fine line making sure you’re not pushing the baby too much that they go backwards. Be flexible, understand that babies often go backwards before going forward and they can go forward and then go backwards but when they turn that corner it happens quickly!”

Bodhi and Layla the rainbow twins, a little older and a little bigger!

Mandi says: “it feels impossible, but make sure you are napping, eating something. Education is huge. Therapy helped me massively to treat the trauma of the journey, as did journaling Haven’s journey on his Facebook page (see more here). Try and find forums, groups, resources, connect with other mamas that will help you survive the NICU journey. Recognise that your thoughts are justifiable by the journey and valid, but that therapy may help you with distorted thoughts (such as “I failed”, “I’m a bad mother” etc). Thoughts are just messengers, and we need to listen to them”.

Happy Haven, home at last!

And all three of us agree and advise of this one final point: your mama instinct is not to be ignored. Advocate for your baby, get educated on the medical jargon, speak up, ask questions, become the expert on your baby’s story. A mother’s intuition is strong and shouldn’t be disregarded. If you are worried about your baby, then the NICU team should be too.

There are more resources and information on emotional health after birth here, and more about trauma and PTSD here.

Make sure you read my tips on supporting NICU parents here!

Are you a NICU Mama? Comment below with your baby's name and story! Or leave your thoughts on this article below. 

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[1] Harrison W, Goodman D. (2015). Epidemiologic Trends in Neonatal Intensive Care, 2007-2012. JAMA Pediatr 15;169(9):855–862. doi:10.1001/jamapediatrics.2015.1305

[2] Australian Institute of Health and Welfare 2018. Australia’s health 2018. Australia’s health series no. 16. AUS 221. Canberra: AIHW

[3] Hynan,M.T.; Mounts, K.O.; & Vanderbilt, D.L. (2013). Screening parents of high-risk infants for emotional distress: rationale and recommendations. Journal of Perinatology 33: 748 – 753

[4] Burgess, A.P.H.; et al (2016). Determination of antepartum and intrapartum risk factors associated with neonatal intensive care unit admission. J Perinat Med 44(5): 589–596

[5] NHS Improvement (2017). Reducing admission of full-term babies to neonatal units. Retrieved from https://improvement.nhs.uk/resources/reducing-admission-full-term-babies-neonatal-units/

[6] Campbell-Yeo, M.L.; et al (2015). Understanding kangaroo care and its benefits to preterm infants. Pediatric Health Med Ther 6: 15–32.

[7] Royal Children’s Hospital (2016). Skin to skin care for the newborn. Retrieved from https://www.rch.org.au/rchcpg/hospital_clinical_guideline_index/Skin_to_Skin_Care_for_the_Newborn/

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