Tag: NICU life

Supporting single parents in NICU

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Premature baby and mother hands

Throughout my pregnancy, I hung onto the hope that things would be easier once I had my baby. It wouldn’t be so odd to be single with a baby – there’s loads of single parents, right?! Since L arrived, I’ve felt much more comfortable about my single parent status. People are too busy fussing over how cute he is (or usually how small he is…) to care about my significant other. I surround myself with mums on maternity leave, not a partner in sight as the paternity leave ebbs away. Sure, I can’t join in the mother-in-law outrage but we spend far more time moaning about our lack of sleep anyway.

But I hadn’t expected the in-between world of NICU. No longer pregnant, but not able to take my newborn baby home. The NICU bubble isn’t designed to be compatible with single parenthood. The basis of family-centred care in the NICU is 24/7 access for parents. Parents. Plural.

I had no idea how NICU worked as I’d been too traumatised the evening before L’s arrival to listen to the nurses scrambled to my bedside to brief me on their secret world. I broke down in tears and they were quickly whisked away. Several hours after my c-section, my mum wheeled me down to L’s incubator. A few minutes after I had seen my son for the first time, a nurse told me they’d make an exception for my mum on this first occasion. My head was spinning – I couldn’t do this on my own!

Once I had some time to gather my thoughts, I realised that the NICU norm was 24/7 access for the mother and the father. There was a separate hour visiting slot on weekends for grandparents and siblings. I liaised with the nurses and my mum was granted parental rights to visit L at any time, but I had to be present. I felt grateful for this and didn’t test the boundaries of her pseudo-parental role until we were moved to SCBU. I was too overwhelmed to argue my case for the support I needed. I hope I will never encounter NICU again and certainly not as a single parent. But if I did my time again, I would’ve ensured that I had the same support as every other mother on the unit. If you are a single mother on NICU, here are my suggested things that you expect as support from the unit [based on the policies at my NICU – other NICUs have less/more strict terms]:

– a named person with equivalent parental responsibilities: after negotiation, my mum was allowed to visit L whenever I was present. It wasn’t too difficult to achieve this and my mum was named on our contact forms as the ‘other’ parent. It was made very clear to me that my mum was allowed in as my support and not in her own capacity. Although I didn’t realise this at the time, it placed a huge pressure on me. Like all NICU parents, I was paranoid about becoming ill and being unable to visit. If I fell sick, L wouldn’t have any visitors. An agreement that my mum could visit independently would have eased the pressure on me and perhaps would have allowed me to have a break. I can’t imagine not spending every day at the hospital, but it would have been nice to have spent some evenings resting knowing that L was in the company of his grandmother.

I had never envisaged a situation where I wouldn’t be able to care for my baby after his birth and luckily I wasn’t in that situation. But I know many other preemie mums who were in ICU themselves after their early delivery. I wish I had put a disclaimer in my maternity notes that my mum should be granted all parental rights in the event I was incapacitated. I couldn’t bear the thought of L being in NICU all alone if I had also been unwell following the c-section.

– physical contact for the other person: I was given an almighty telling off when I asked my mum to help me change my 2lb baby’s nappy in the incubator. I was scared, not quite sure how to lift his wires without hurting him, but wanting to show the nurses I could do it myself with a little family help. Only parents can touch the preemie. But I knew once we were discharged, my mum would be the other person cradling L. As L became stronger, I was increasingly frustrated that he wouldn’t recognise my mum’s touch.  I asked several nurses if she could touch L but the answer was always only parents could touch the baby. It was a ridiculous application of protocol – why would L’s biological father, who hadn’t spoke to me during my entire pregnancy, be allowed to waltz in and pick up the baby in the place of my mum who was by my side throughout? I plucked up the courage to raise the question during the consultant round, much to the indignation of the nurse on duty. The consultant agreed immediately that my mum could touch L, as she was my partner in NICU for all other purposes.

The first time my mum held L was a beautiful moment. She couldn’t believe quite how tiny he was, despite seeing him nearly every day for the last 4 weeks. But the moment was ruined somewhat by one of the large bulky privacy screens surrounding us, incase other parents saw and wondered why I had special treatment. This made me feel as if we were doing something wrong. Single parents should not be made to feel guilty for wanting another pair of (non-parental) hands to help out.

– no questions: I haven’t seen L’s medical notes, but I assume there would’ve been clear instructions that his father was not involved in his care. Despite this, I got asked several times by different nurses if he had been in contact or if he was planning to meet L. How long we had been together. Did he live in the same city as me? Yes, I know we all like to have a gossip and as far as I could tell, I was the only single parent in our NICU. But there is a time and a place.

– respect: This may have been me with a chip on my shoulder, but I often felt like I was treated differently to some of the couples on the NICU. When dads turned up at the end of the day, chairs were pulled up and updates were given to the other parent. My mum would often have to hunt down a seat and would not really be acknowledged in the same way. I was talked down to when I disagreed with a care plan or course of action. I made to feel like I was a silly teenage single mum rather than a professional woman. I once overheard the nurses talking about a surprise for the dads on Father’s Day – a card or something with the baby’s prints. I spoke aloud and asked if L could have something addressed to his grandad. They seemed shocked that I had overheard (it was in the middle of the quiet ward, I was the only other parent) and said it was supposed to be a surprise, rather than reassuring me that L wouldn’t be left out.  If situations arise that shine a light on a parent’s single status, nurses could consider the best way to address it with the parent.

The loneliness that a single parent will feel in NICU is inevitable, despite the best intentions and support from staff. There were many nurses who did provide me with support and kind words when I had to answer questions about L’s father. But the NICU environment could be made more sympathetic to single parents, with some minor tweaks and a little thought.

BBC’s NICU: ‘Five Days’ on Casualty

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Spoiler alert: review of Casualty series 31 episode 28 ‘Five Days’ – watch online at BBC iPlayer. Photo credit: BBC 

Despite being sick of the sight of hospitals, I’m a big fan of BBC’s Casualty and Holby City. I hadn’t registered at the end of last week’s episode (when nurse Robyn gave birth to her baby prematurely in a graveyard) that the show would be featuring Holby City Hospital’s NICU. When my mum came over for Mother’s Day, she cautiously asked if I’d watched last night’s episode. I’d fallen asleep at 8pm (not an unusual occurrence), so no. She warned me against watching and said it had brought everything back for her. So of course, I quickly loaded up iPlayer…

Yes, I did shed some tears. Although it was only 10 months ago, it was hard to comprehend that my own baby L was also so small. It is easy to forget that we were also separated by the wall of an incubator and I had to ask permission to touch my own baby. Of course, there were various inaccuracies or exaggerations which bothered me. But on the whole, I was impressed by the BBC’s efforts. The episode captured the raw emotion of Robyn’s experience as a new mother of a premature baby. There were subtleties that the average Casualty viewer might miss, but poignant to those that have lived through the NICU.  If you still intend to watch the episode, look away, but the following scenes struck a cord with me:

  • The sight of Robyn languishing on the maternity ward, alongside mothers and babies. Great progress has been made in creating specific areas for mothers who have tragically suffered a bereavement during childbirth or a stillbirth. But the only place for NICU mums is the general maternity ward. I was fortunate enough to have a side room on the postnatal ward, but I could still hear the cries of babies for six nights straight during recovery.
  • The generic NICU environment is captured perfectly and brought back many memories. The room is lit by the blue glow of phototherapy lamps and alarms are constantly buzzing away. There are numerous shots of hand-washing, which is an all-too familiar aspect of the daily NICU parental routine. I even spotted a copy of Little Bliss on the NICU noticeboard!
  • As Robyn prepares to meet her baby Charlotte for the first time, she dismisses the nurse’s medical update to get a glimpse at her precious baby. Unlike non-NICU mums, parents like Robyn are forced to wait many hours before they can meet their newborn for the first time. A mother will often need time to recover herself from the unexpected or surgical birth and will not be fit enough to visit NICU. It is incredibly difficult to meet your child for the first time in the presence of strangers. The abrupt nature of the nurse mirrors my experience too. Whilst NICU nurses are generally incredible, they can often forget the overwhelming experience of greeting your baby through a plastic box. The curt remarks aren’t intentional; I imagine they are desensitised to the sight of a 2lb miracle.
  • The nurse’s general attitude is pretty rubbish, but again, accurate. Robyn is chastised for touching her baby too much. There is nothing more frustrating than being told what you can and can’t do with your own baby. But it happens. And like Robyn, I often left the ward in floods of tears or went outside to scream. I can remember the invisible brick wall of NICU vividly. NO-ONE WAS LISTENING TO ME! I had meltdowns in the middle of the ward. I would spend hours crying at home, on the verge of calling the Bliss helpline to ask what my options were. But like Robyn, I learnt to play the game and ask the right questions to the right people (specifically: always be around for the daily consultant rounds).
  • But the nurse does show us her softer side. Robyn is summoned to comfort Charlotte before a procedure. A dejected Robyn has lost faith and asks “What difference am I going to make?” A familiar emotion in NICU. At times I just felt like a cow, rocking up to provide the milky goodness and do a token nappy change to make myself feel better. The nurse is proved right and Robyn takes comfort from her daughter’s calmness. The nurses I despised the most in times of crisis often turned around to be my biggest ally in making progress towards discharge. Sometimes there is a purpose behind the tough love.
  • Breastmilk. A hot topic in NICU and for good reason; breastmilk is especially important for premature and sick babies. I am a huge advocate of breastfeeding and was fortunate enough to receive incredible support from my midwives with expressing. But I know many mums will recognise the pressure placed on Robyn by the nurse to keep expressing. I hope the scripted lines strike a cord with viewers – baby Charlotte only needs 2ml for her feed. However meagre Robyn’s attempts to express may be, she should be able to get enough for her baby’s tiny stomach. I loved the scenes of Robyn excitedly asking for photos of her baby’s first feed, administered by Robyn via a tube. It IS a milestone! And what an incredible achievement to feed her baby mother’s milk.
  • Robyn’s friends and the nursing staff seem surprised at her eagerness to post photos on Facebook and share updates. She must be in denial, not realising the gravity of the situation. Is it such a crime to try and think positively in such a devastating situation? I could really relate to Robyn’s need to share snaps on social media. Once you reach a certain age, timelines are flooded with photos of gurgling newborns and chubby cheeks. Robyn has a legitimate urge to recognise her baby in the same way. I uploaded a photo of L a few hours after he was born, before I had even met him. It made the birth feel real to me. Over the next few weeks, I shared endless photos with cute taglines. It is only now I can see the tubes, the yellow tinge to his skin, how desperately unwell he was. But at the time, he was just my gorgeous newborn that I wanted to show off.
  • But of course, the Beeb was bound to include some scenes which had us NICU parents shouting at the screen. Thankfully, L didn’t have the same medical issues as Charlotte so I can’t comment on the accuracy of the procedures. I did tut at Robyn being allowed far too many visitors around the incubator. I have no idea if there are different rules if you work in the hospital, but I doubt it. My hospital had various rules about who could visit at different times and it was always two around the bed maximum. Robyn’s position as a nurse seemed to entitle her to a full house.
  • And her step-brother kissed the baby at the end! A NICU baby! I actually lol’d at this point. My mum was constantly watched for any signs of interaction when she came along to visit L. As a treat, she was allowed to touch him on her birthday until I got permission from the consultant for parental rights in L’s fathers absence. But touching is a big no-no on NICU. Everyone (apart from parents with their magical powers) is a germ-ridden infection risk.
  • UPDATE: Catherine (@catjay79) kindly got in touch via Twitter to share her perspective on the episode as a mum of a necrotising enterocolitis (NEC) survivor: “The portrayal of a baby undergoing surgery for NEC was inaccurate and downplayed the severity of the condition. After surgery babies are often critically ill, kept ventilated and require intensive support. My daughter remained on a ventilator for 6 days following surgery and was bloated due to fluid retention. Holding her was simply out of the question; I could not hold her until 9 days later. The first 48 hours after surgery are crucial for these babies. Surgery is a huge risk and some tiny babies sadly don’t survive. We owe it to them to portray these things properly.”

I’m sure I’ve missed other exaggerated scenes. My focus was on the familiarity, the sounds and sights that I lived for six weeks. Five Days may not have been the perfect representation of my NICU experience, but it was a marvellous opportunity for prime-time views to peek into our secret world. Thank you BBC for showing NICU through the eyes of a struggling mother, rather than merely dramatising the plight of our tiny babies.

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