Neonatal loss – A personal story

I had frequent admissions to hospital during my pregnancy with my son. In the beginning I noticed the mums who were referred to as resident patients who would be given priority for the side rooms on the antenatal ward. I remember thinking that must be quite nice having a room to yourself to relax in, it never occurred to me the enormity of what high risk pregnant parents endure until I became one of these parents too. My knowledge of neonatal units was very minimal, I had seen the SCBU section but hadn’t been shown through the NICU area through the double doors at the end of the neonatal corridor. I recall the midwife giving me this tour saying it was where the very poorly babies were cared for and as they get better and stronger, they progress down the nurseries of the corridor before being discharged. There was storyboards on the walls of previous babies admitted to the unit and had been discharged home with follow up photos being older babies and children, the walls also displayed many thank you cards filled with so many moving words of appreciation to the staff on the unit. 

On the antenatal ward which would sometimes be mixed antenatal and postnatal mums I remember hearing parents speaking about their new-borns going down to SCBU for antibiotics. From outside the doors of the neonatal unit it looked like any other entrance of a ward on the maternity block just tucked away in a quiet corner of a floor level. Outside the building I was drawn to the blue glow at the windows – I had no idea what was causing this glow of blue light, but I remember thinking it looked pretty in the evenings when it was dark outside. When I became a resident patient, it didn’t truly occur to me that firstly my baby could be born prematurely and secondly it was highly unlikely I would be discharged from the hospital again before delivery. We never really discussed in much detail the probability of premature birth, instead we focused on everyday baby was within my womb was the best for baby.

There were “perks” of having a room of my own in that I had more privacy, staff were more relaxed with visiting hours and I didn’t have to share a bathroom. What I wasn’t prepared for was the isolation or the actual living in a hospital, the impact of the fast turnaround of discharges of other mums and parents with their new-born babies, repeatedly explaining my situation to different professionals sometimes 3/4 times a day and avoiding parents questions because I had no answers for “how long would I be staying” or comments on how far I still had of my pregnancy remaining. 

I became structured in the hospital routine until one night I felt achy in my thighs, later into the night I was woken to my waters rupturing. In a matter of minutes, I was rushed from my little side room down to the labour ward, terrified because my baby wasn’t due for another 11 weeks! Sliding scale, steroids, catheter, monitoring, bloods and scans suddenly our world has changed from frustrated boredom where I knew all the ward staff by first name to sheer panic. We spent 5 days on labour ward before Tobias was born. 2lb 11oz, he was perfect but the tiniest most fragile human being I’d ever seen! Rushed down to neonatal, our introduction was momentarily brief. 

It was a few hours before I was well enough to go to see my baby for a proper “hello”. I reached the doors of the neonatal unit where I discovered there to be two buzzers, one for SCBU the other NICU. I pressed the one for SCBU because obviously Tobias would be there, he was small but fine – I’d seen him! A lovely nurse welcomed me to the unit, I washed my hands and she told me Tobias was in the NICU area of the unit. I felt afraid, I mumbled to the nurse “behind those doors?” Yes, she said walking me down the corridor and I’m thinking but that’s where the really poorly babies go oh my god what’s wrong with my baby?

Approaching the incubator next to the nurses station was my little man and he was doing wonderful, breathing completely unaided and looking very snug, he had monitoring wires attached to him to help the staff observe him but It was really confusing to me because all the babies I could see were looking so much more in need of an intensive care space requiring lots of support and here was Tobias looking so well. 

The doctor said he was being observed in NICU as a precautionary measure and he should soon be moving down the corridor. There was much emphasis on the unit of graduating down the corridor and lots of positivity to the eventual big day of going home. I learnt that premature babies can spend considerable time on the neonatal unit and for most babies’ discharge seemed to be around the due dates this was anticipated for Tobias. I didn’t really know too much about the term babies admitted to the unit at this point, most appeared to come from the wards for antibiotics before returning to mums’ bedside. I discovered the blue light reflection came from the overhead Phototherapy lamps used to treat the babies who had jaundice. 

The first time I heard the alarms sound for another baby I felt terrified, this baby wasn’t mine, but every part of my being was willing this baby on to be ok! Thankfully on this occasion it was a false alarm a piece of monitoring equipment had come lose as baby moved. It’s strange because while bleeps and alarms would have me on edge every time they sounded I quickly developed this sense of whatever was wrong would somehow eventually be ok. 

I think Tobias was 2 days old when I was first offered to change his nappy. A nappy that looked like something a child would use to play with on dolls. I looked at the nappy then my baby and I just couldn’t do it, he looked way too fragile. I asked the nurse if she could do it this time and I’d try the next something I deeply regret not trying to do initially to this very day. As the days moved on, I did grow in confidence with participating in Tobias’s cares and I’m so appreciative of the support of the neonatal staff who helped me to do this. On day 5 I held Tobias this wasn’t the first time but was as special. I was incredibly proud of my little man and couldn’t wait for our graduation day out of intensive care. After much time on the unit in the morning, and still an inpatient myself, in the early afternoon I returned to the ward to have a rest. Upon waking a midwife informed me the baby doctors wanted to talk to me and to wait in my room. I paced for a few moments, but instinct took over and I found myself at the entrance of the neonatal unit. I overheard one member of staff speaking to another to say neonatal was “closed” to an emergency the penny hadn’t dropped that emergency was my baby. 

As I got nearer to Tobias much activity was going on around him with lots of staff, I could see he was on CPAP which I wasn’t too scared about at this point because I had realised sometimes premature babies need additional support and he had worked so hard since he was born. I was ushered into the parent’s room and asked to call someone to be with me and a doctor would come and speak to me soon. Relatives arrived and the doctor returned briefly to say Tobias was very unwell, he needed to be placed on a ventilator and she would return to talk to me more shortly. Ok so this was sounding more serious, but everything would be ok. The doctor returned with a nurse and they explained Tobias was desperately unwell, he had a poorly gut and what sounded like a problem with his “NECK” they didn’t feel he would survive the night. We were asked if we would like a baptism or religious blessing. It was explained Tobias had been referred to a different hospital, but the hospital wasn’t able to accept him because he was so poorly, he wasn’t considered stable enough to survive a transfer. Whilst I can recall every word spoken today, at that moment nothing registered, nothing made sense, his NECK seemed fine and what was wrong with his bowel? during my brief time on the neonatal unit I had seen how alarms could go off unexpectedly or a baby might have lots of medical activity around them and as terrifying as this was in the end the babies appeared to settle again. There wasn’t really opportunity to ask many questions particularly being a smallish unit the priority had to be on Tobias. I couldn’t be by his side as the medical staff were still caring for him, so I paced the corridor, I made tea and coffee for my relatives and then the Vicar arrived to christen Tobias. Nurses found a beautiful white hat and screens were drawn around us for privacy. I cannot remember much of the christening it was very fast and before I knew it, I was back in the parent’s room waiting to be allowed back to Tobias’s side. The doctor returned to tell us Tobias had improved a little, enough for a Professor at a Children’s hospital to accept his referral. The transfer team were on route. Everything then happened fast, although for me time was ridiculously slow. The unit staff and the transfer team worked relentlessly through the night to get Tobias safety onto their equipment. I paced the corridor, made more tea and stood outside bargaining with any gods or powers for everything to be ok. Very early morning Tobias was transferred by blue light to the Children’s hospital I was briefly able to see him before they left, a nurse took a photo for me. I wasn’t allowed to travel in the ambulance with him. 

By the time we had reached the Children’s hospital Tobias was already in surgery. The Professor himself had operated and when he and his colleague alongside Tobias nurse came to update us, I could sense it wasn’t good news. They explained Necrotising Enterocolitis (NEC) a little more to me, it was nothing to do with Tobias’s Neck it was entirely his bowel.  

Tobias had a side room and we was able to have cuddles. The nurses did some foot and handprints for us and took some photos they were able to print for us on the unit. This NICU felt very difficult to the neonatal intensive care unit we had come from; I could only imagine to be like a NASA space centre. I was so scared I’d never seen someone pass away and my biggest fear was if the tubes were removed Tobias would struggle or be in pain and it terrified me. I didn’t know what to expect, I just couldn’t get my head around what was happening it was like being trapped in a nightmare you can’t wake up from. 

Later that evening surrounded by our family Tobias died peacefully in my arms he was just 6 days old.

My sister bathed Tobias with the support of his nurse. I asked if we could return to our local hospital as it was closer to home, I was familiar with the staff and I wanted to spend some time with Tobias in a place that I felt safe. The unit staff went to massive lengths to make this possible and an ambulance was arranged. Tobias’s nurse came with a new-born car seat and Tobias was dressed like any living baby would be. Arriving at our local hospital I carried my sleeping baby in his car seat to the neonatal unit in the silence of the night. We stayed in the rooming in room of the unit, Tobias had a cot like those on the postnatal wards and the doctor who had worked so hard trying to save him the night before came to visit and hold him. The doctor spoke to him just in the same way she had when he was alive, and this truly meant the world. I spent 24 hours alone in this room and it was initially scary, I wanted this time with him, but I wish too I hadn’t been so alone.

I was invited back to the antenatal ward for meals, but this was so painful I only went to the ward once. I knew when it was time to say goodbye and the last thing, I felt I could do for Tobias was carry him to the chapel of rest myself. I did get to walk through those doors at the end of the corridor eventually with my baby, but every step was the most painful steps I had ever taken. 

I left the hospital with a green hospital patient property carrier bag of Tobias’s clothes, arm splint, foot and handprints and the few photos I had. I called for a taxi hoping I had enough change to pay for it and I waited numbly outside the entrance as proud parents left the hospital with their babies in car seats holding congratulations balloons. 

At home I went into autopilot registering Tobias’s birth in one local authority one day and registering his death in a different local authority the other side of the city the next. I was clueless what I needed to do in practical terms of his funeral arrangements and felt there was nobody to ask but somehow things came together. 

I received a letter from the health visitor offering condolences and funeral flowers were received from both units Tobias was cared for on followed by an invitation to meet the doctors to discuss what had happened when I felt ready. Postnatally from the point of Tobias being transferred to the Children’s hospital I never received any further postnatal care which was hard because I didn’t know how to cope with the milk I was producing or how long I could expect to be bleeding.

Tanesha

After Tobias’s funeral many people I knew just disappeared, people didn’t know what to say or how they could support me, and I didn’t know how to ask or even what I really needed. In trying to make sense of everything that happened to Tobias with his Daddy who was also struggling enormously, I became pregnant with my daughter who was prematurely stillborn at 24 weeks. I was told it was unlikely the same outcome would happen again. I really didn’t think this baby could die too. I felt I was automatically expected to know how to deal with my second loss, but I didn’t. My stillbirth and neonatal loss were completely different but no less in trauma or pain or my love or longing of both babies.

Alongside grief I was battling with anxiety, depression and trauma of my experiences of premature birth. To this very day I feel on edge when an emergency ambulance on blue lights passes by. Inside, I want to scream at non-compliant traffic go get out of the way! It sends shivers through me and takes me right back to our journey. The sounds of neonatal equipment bleeping are sounds that have now become normalised in my memory but for a long time I found these to be very distressing. It was 2 years after my losses before I sought information about local support groups and found a wonderful parent led group who supported me to finally begin to grieve. I felt pressure to have a subsequent pregnancy, part of me wanted to have a baby too but physically this wasn’t possible. I felt like I had failed in all aspects of being a mother and this was incredibly hard.

Today more than 10 years on, I’m much further along in my journey, I’ll always be firstly a mummy to Tobias and Tanesha, secondary to being a former NICU parent and part of the neonatal community and whilst I still and probably will have days that challenge me emotionally, I’m generally doing very well. 

Neonatal Mental Health Awareness Week is a time for us to acknowledge the mental health needs of both families and professionals, the different outcomes we have and the impact of our exposure to these highly stressful environments can have on us at any stage of our journeys. It’s ok not to be ok and when we are not ok, we need to know support is assessable to anyone who needs it. 


Facts & Figures

79% of parents said a neonatal stay affected their mental health

Did you know, a ventilator costs on average £25,000

Did you know, reading to your baby in the NICU helps their development?

Leo's Neonatal

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