‘Special care is hard on the heart’ — my preemie baby journey
For every 13 babies born in the UK, one baby is born premature. Each neonatal experience will affect families differently, but we know how important it is to feel connected with people who have a similar journey.
There are many parts of neonatal care that can go unspoken; from the overwhelming sounds of the unit to discovering how strong your baby is for the first time. It can make a big difference to read other people’s stories.
A client shares her own story
I was once told that ‘Special Care is hard on the heart’…they weren’t wrong and as I reflect back on the events that have led me to Birth Trauma Solutions (and our subsequent sessions) Special Care was so much more than that – I feel fundamentally changed. The impact of that change has imprinted on me in more ways than one and I hope to explore that change as I re-frame my narrative, my story.
As a mum of to two boys already, I felt pretty confident in my surprise third pregnancy. The actual pregnancy thus far had been fairly straightforward, the first lockdown actually provided me some rest from quite a stressful job and although I had to work from home and home school, it was manageable. Even the knowledge that I had Placenta Previa did not provide any concern, perhaps because the doctors and midwives seemed quite blasé about the condition – it would just result in a c-section should the placenta not move. I had not, therefore, anticipated to wake in the middle of the night on the 2nd of June to a haemorrhage. I had been told a bleed can occur with the condition; I had not been told that the bleed could be so large. I actually thought that my waters had broken, having experienced this twice before and the sensation feeling exactly the same – a slight trickle, a pop and a gush. What followed in the bathroom light was the realisation that I was losing my baby!
Having already shouted out to my husband that my waters had broken and then realising the magnitude of the situation, I knew that we needed some help. As I sat bleeding in the bathroom, I directed my husband to grab the maternity notes and call triage and an ambulance. With two young boys still at home, we carried out the phone calls and packed in hushed tones and with urgency. Unfortunately, my husband, either from shock or from the sight of so much blood, found the situation quite panic inducing and was on the verge of passing out on several occasions. With the ambulance on the way and the direction to lay down on the bathroom floor, there was little I could do but I was able to remind him to open the door for the paramedics – an action I later found out he crawled to do before he very nearly passed out in front of them. Perhaps it was his own panic that made me so very calm – or as a teacher, I drew on those skills to take control of the situation. Either way, I am still so surprised to look back on that moment and see how calm and collected I was. It was a strength I didn’t know I possessed and yet the image of lying on the bathroom floor was one that resurfaced significantly during my sessions with Tracy. Originally I thought that the image came to the forefront because it looked so harrowing but perhaps it was actually my subconscious showing me an image of strength and bravery – an aspect of myself I had forgotten or thought lost!
I went to the hospital in the ambulance on my own – knowing full well that I could have to face some very difficult news alone. My husband followed me to the hospital once we had child-care in place for the boys and was up in the labour ward by 5am. The doctors and midwives quickly confirmed that the baby was fine and the bleeding had stopped – caused, they said, by true placenta previa therefore identifying that there was a risk of a second bleed. I was quickly given a dose of steroids and placed on magnesium sulphate as a precaution for labour. I was warned that the magnesium sulphate was not very pleasant – they were not wrong as what followed were hot flushes, fitting down one side of my body and nausea but I knew that this was needed for the baby and so was just pleased they were taking precautions to protect them.
By 2pm in the afternoon, no further bleeds had occurred, I was offered tea and toast and so I told Ryan to go and see the boys and make sure that they were ok as it looked likely I would just be kept in for observations. Tea and toast on maternity wards always taste the best for some reason and as I settled down to take a nap and get some sleep I felt the horrible sensation of a trickle and I knew that once again I was bleeding. The midwives sent a doctor in to examine me as they decided that they needed to know what was happening internally and when the examination took place, another large haemorage started and I knew it was a lot larger than the first. The lovely female doctor was incredibly calm but she informed me she wasn’t happy with the bleed and that a c-section should be prepared for. It was at this point that I allowed myself to cry – I was in hospital, on my own, being told my baby needed to be delivered at 32 weeks.
Yet this decision was somewhat over-ridden by a consultant who then came to carry out an examination and decided that the bleeding was stopping and that every hour that the baby stays inside is a better chance of survival. I remember questioning this decision internally but decided that they knew best and I did feel in capable hands. Ryan was called for a second time to let him know the situation. Luckily, he was on his way back as a second female doctor, seemingly unhappy with the situation, wanted to check herself and a further bleed and a distressed baby moved the situation along quite quickly. What ensued from there was a hive of activity – doctors, anaesthetists, midwives all prepping me for the c-section with forms to sign and explanations given. Whilst at the same time I was texting my mum letting her know where to find my eldest’s uniform, book bags and lunch for school! Why, in such a dramatic situation, did I think it was vital to give my mum these details I don’t know but I think as a mum already there was that pull to also make sure that my other children were ok.
I was rushed into theatre and given my spinal injection – something I was already familiar with due to having had a spinal block following a third degree tear with my second child. Again, I felt strangely calm, at ease in the hands of the professionals and actually just grateful that a decision had been made to take the baby out to ensure it’s safety. What then happened is something which will stay with me for the rest of my life – a moment I have been exploring with Tracy and an event that I will unlikely forget. The nurse informed us that the baby was out – and then we were hit with silence. Amongst the beeping and the movements and talking of a full theatre, the silence was deafening. My baby didn’t cry. The anaesthetist, in his colourful hat, calmly informed us that the baby was just a bit sleepy and that we would hear a lot of alarms going off as it needed some help and that the theatre would become very busy. They looked calm but their demeanour was not and it was clear that this was not a calm situation. The nurse very kindly passed me some tissues at that point and told us that we had had a little girl. We did not know the gender of the baby prior to this, having decided that this time round we would keep it a surprise. We had two boys already and it was no secret that I longed for a girl. I remember lying on the operating table thinking “I finally have my little girl, and now I have lost her”. In that moment I felt grief – grief for the baby that I thought I was losing and also grief for having been robbed of a moment I had longed for – a missed moment that I would never have. And then we heard a cry, and an audible sigh of relief within the theatre. Our little girl had been resuscitated and was breathing – and yet I had not seen her and wouldn’t see her until several hours later.
Because the c-section was an emergency and there was a risk to the baby’s life (we later found out the heartbeat had gone during the spinal) I was cut extra wide for a quicker delivery – something which I was told as I was being sewn up. I felt quite accepting of this, my baby had to be delivered quickly and a slightly larger scar was not something I was actually concerned about. We were told that the baby would be taken to the special care unit and assessed in there (should she not be stable or was in a serious condition then we had already been informed that we could end up in the Trevor Mann unit in Brighton). Ryan was allowed round to see her and took a photo of our little girl in the incubator for me to see – she was a large preemie baby sitting at 4lb 10 already at 32 weeks – something I was actually very grateful for as I felt it gave her a better chance!
Our stay on the Special Care Baby Unit
As a third time mum, having already had a baby on special care for a week previously, I knew what was in store for us. At least I thought I knew. I knew the staff were great; I knew where to go when I was finally allowed to see her and I knew the layout of the ward and felt comforted in this knowledge at the time. But having a premature baby on special care is a very different experience and although I was familiar with some aspects of the journey, nothing could have prepared me for the next 5 weeks. At 10pm, several hours after the c-section, I was wheeled round to sit with my little girl for the very first time. The phototherapy lights were familiar, having already had two jaundice babies, as was the little superhero mask they place the babies in during this treatment. But the incubator was new; the cannula was new; the tubes and wires were new and yet we felt ourselves amongst the lucky ones as our little girl could breathe on her own. I quickly learnt that on the unit it is the little things that give you hope and something to hold onto.
With covid restrictions in place, my husband was only allowed on the ward for 2 hours a day. We were informed that Phoebe would have care times and even though I was allowed on the unit at any time, I would only be allowed to touch or handle Phoebe during these specific moments. I knew it was for the best but I longed to just sit and hold my baby; to have that precious time to bond with her.
Although I was on the part of the maternity ward which had direct access to the SCBU, I was also amongst other mothers who had their babies with them, who didn’t have to ring on a door to request to see their child. I had been here before and knew what to expect but it pained me to know that I wasn’t able to have my baby with me, to care for her as I wanted to. And so I threw myself into getting myself walking and mobile to make sure I used this time to recover from the c-section. I had been told that breast milk was easier for a preemie baby to digest and therefore, without a baby to nurse, I began hand-expressing to collect colostrum and to bring my milk in. Looking back I think I just needed to feel useful, like I was doing something for my child! I could have spent all day on the Special Care Unit had I wanted, and it wasn’t that I didn’t but more that I just felt a bit useless sitting there, almost like a spare part. It wasn’t that I felt like an outsider looking in or that I couldn’t be there but with just snatching moments of care, the rest of my time was sat watching a baby in an incubator that I couldn’t touch or be close to. I wasn’t sure what to do with myself in all honesty. And so I spent a week on the maternity ward in that state of limbo, in an institutionalised routine of pumping, visiting and resting; having two hours contact with my husband and spending the rest of the time alone. Part of me was desperate to return home, to be discharged so I could spend time with my boys – the other part of me was desperately sad that I would be leaving the hospital without my baby – leaving her in the care of others with no end goal in sight. I was happy, I said, to be discharged – I wasn’t prepared for the tears that would follow or the hollow feeling that gnawed away at me.
Our journey on SCBU was a rollercoaster. Seemingly smug to begin with at her size and ability to breath on her own, we thought our journey would be straight-forward; that our baby had arrived a couple of months early and just needed time. What actually entailed was a 5 week journey of going backwards and forwards to hospital, not knowing what you were walking into and not knowing if she would be ok. The nurses and doctors were amazing and we had every opportunity to call into the ward during the night to find out how our little girl was – and yet somehow I couldn’t bring myself to call in. For some reason I found it easier to just think that everything was fine and I’d face it at the hospital then call earlier and worry until I got there. On reflection, it was just a coping mechanism – delay the worry and deal with it whilst surrounded by others – ultimately not dealing with it as I am very good at putting on a brave face and staying extremely calm in high pressure situations. I always wonder whether the staff just thought I didn’t care; whether all the other parents were constantly calling and I was a bad mother for not.
Our seemingly straightforward start began to slowly change as our little girl constantly de-saturated and had experienced high volumes of bradycardias – a term which will be forever in my vocabulary and meant that her oxygen and heart rate would dip below an expected level and cause her alarms to constantly set off. We all joked at the time that the babies who shared a room with her would need alarms as their white noise when they returned home, but truthfully, those alarms haunted me. I became obsessed with numbers – watching the monitors and the rise and fall of her trace.
As the weeks went by we were moved to a room and position within that room where the nurses could see her monitor from the station as her breathing was so erratic that they needed to see her numbers constantly. The most concerning times were when her levels took some time to come up and you noticeably saw the change in her colour or watched as the nurses stimulated your baby to help her to begin breathing once more.
Our little girl became well-known on the ward – not only for the alarms but also for following her own path through preemie hood – her unpredictability not filling us with any confidence. As a third time mum, you would have thought that we would take the events in our stride and yet, although I may have appeared more confident than some, I felt out of my depth. I felt like I needed to ask if I could change my baby; if I was holding her right; was I manoeuvring her correctly – all things that should have come as second nature. When the decision was made to place Phoebe on oxygen using cpap. I felt like we had gone backwards – our baby who could breathe fine on her own at birth no longer could. Not only had I just learnt how to change our baby with all the wires, I now had to contend with oxygen tubes – I felt even clumsier than ever and I know that my husband felt even more unsure than I did. I think we often overlook how our partners feel in those moments. I was up at hospital day in day out; he took over the primary care of our boys and so had limited time on the ward during the week. I was taught by the nurses how to manage certain wires and probes, my husband wasn’t able to do that. And so they became scarier and more worrying to him.
It was on those days that leaving her in hospital became increasingly hard. I always tried to not leave when her alarms were being set off – even though I knew that as soon as I left the chances of her having a baby was high. But this was increasingly difficult - with two young boys at home I needed to be there for them for bedtime and having had a c-section I was unable to drive therefore reliant on being picked up at specific times. I didn’t have the luxury of time like some of the first-time mums who were able to be constantly at the hospital and I felt bad for that, guilty on our little girl that already I was being stretched in different directions. The nurses were understanding of our situation but to be brutally honest I felt like I was absent for our daughter, that I should have been at the hospital longer or more frequently. There was definitely a sense of guilt attached. But it was in the moments that I left hospital that I allowed myself to feel any of the emotions stored from the day – anger, devastation, guilt, sadness and towards the very end, hope. I remember in the early days when I was collected by my dad, he had to come out of the car to help me to get in – not just because the recovery from c-section was physically hard-going but because of the sadness that would overwhelm me as I left my baby behind.
We took a lot of side-steps whilst on the Special Care unit. Some days I would leave her perfectly fine in the morning to then find her moved to a treatment room in the afternoon undergoing tests. An infection was suspected but quickly ruled out on the return of blood results. Different strategies to find out the cause of Phoebe’s problems were tried with the view that she was suffering really badly with reflux causing her breathing to stop and so she was placed onto nutramigen – a highly hydrolysed formula. I had been expressing breast milk until this point with formula top-ups. Being away from our baby meant that my milk supply was low and although I felt so proud of the minimal ml of milk I placed in the fridge each day, the logistics and time spent pumping was becoming difficult. I’d been here before – combined feeding - and I knew how difficult this actually was. Breast feeding, pumping and formula feeding is hard-going as every moment of your day is spent thinking about or carrying out feeding of some description. With our daughter being placed on specialised formula I now had a decision to make – do I continue to pump and provide breast milk or do I place her on the specialised formula only. You would have thought that this decision would be easy – the nurses placed no pressure on me either way, stating that they would support whatever decision we made. What I actually wanted was for them to make the decision for me. The comment at the start of the journey that breast milk was easier for premature babies to digest stuck with me. But in the back of my mind I knew that I was tired of pumping – so then came an agonising decision – best for baby or best for me? It took some time to make a decision and it was only when a nurse sat with me and said, realistically what can you manage when you have her home and with the boys that I knew what I needed to do. In order to be the best I could be to our daughter and our sons, I needed to be more present for them. In hindsight this should have been an easy decision as she was placed on special formula anyway but it wasn’t and I think that was because of the guilt attached to making that decision.
In the days that followed it was noticed that our daughter was looking increasingly pale and becoming sleepier. Things should have been progressing; we felt like we were still going backwards. Bloods were taken and the decision for a blood transfusion was made. I sat with my baby girl whilst the equipment was set up and watched as the transfusion took place over several hours. It was yet another barrier in the way of having her home to finally meet her brothers. The visitor restriction was hard on so many levels but I felt incredibly sad that the boys had a sister that they had never met. I often wonder how different our hospital stay would have been had we been allowed some support in the hospital from the grandparents and family members. Instead we were on this path alone, and it was incredibly isolating.
Thankfully the blood transfusion was the best step that the doctors and nurses could have taken. Within a day our little girl looked and seemed so much better! She fed better, seemed stronger, more settled. And it wasn’t long until the countdown between alarms began. 48hrs without an alarm was the goal. It seemed unreachable but she came close on several occasions but strange as it may sound, I almost wasn’t ready for her to come off the wires. It seemed too soon and too sudden! The anxiety around her breathing already kicking in – there was some familiarity and comfort with the machines and alarms as at least we knew what was going on. How would we know without them?
We were nearly off the monitors – the goal so close to being reached. It was exciting and one step closer. As we were always encouraged to feed the baby a certain amount of milk, I decided on one of her feeds to try and offer the last bit of milk having winded her. Had I been at home, I wouldn’t have bothered. But I felt compelled to ensure she finished the bottle – there was a goal to reach for the amount of daily milk and to be honest I felt like a bit of a failure if I couldn’t feed her properly. And so the last bit of the bottle was offered – but she choked and gulped. It clearly wasn’t right so I sat her upright straight away but her colour began changing – she was losing it quickly. Thankfully one of the nurses was warming a bottle in her room (we were often left alone on cares now) and saw what was happening. She took her straight away and tried rubbing her but by now our baby was blue. I was frozen – unable to react in any way. Help was shouted for and our baby was laid in her incubator, surrounded by nurses and with oxygen pumping. Her monitors were put on quickly and her levels were dropping fast. There was no colour now and she had gone limp – the image has stayed with me. I am thankful the nurses were so quick thinking and they bent her all the way forward – with one large burp she suddenly started breathing. You could have laughed in that moment – that trapped wind could cause all of that drama but actually it was worse – something so small could cause my baby to stop breathing and from there the little knot of anxiety in my chest began to form. How was I going to cope at home on my own?
But coping at home was shortly on the horizon. 48 hours had been reached, monitors were off and suddenly we were being told to prepare for an overnight stay ready to take her home. I had been warned that the end goes incredibly quickly – almost too quickly. You are waiting and yearning every day to take your baby home – its all you fixate on. And then you are told that you can – and you aren’t ready! It’s a really surreal situation and although you are sent home having bathed, stayed over with and taught the basic first aid for babies I am not sure you are truly ready to leave the institutionalised routine that you have found yourself in for the past however many weeks. In our case it was 5. Five long weeks of emotional turmoil but we left with a beautiful baby girl, a lot of anxiety and a sense of relief that we could, for the first time, be a family of five!
Image Credit: Annabel Moeller Photography | @bornecharity @premature.babies