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”.

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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!”

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