One hot Autumn day, a mere 15 weeks premature, my miniature bundle of joy was born. Weighing in at just 740gms, he was whisked away into an incubator on the neonatal ward, where he was put on life support. 

The family was all in a state of shock. We had never experienced a neonatal unit before, and now we are plunged into a new world of sci-fi-looking machines, pumps, tubes and constant beeping. I could never leave Leo alone with strangers I had never met, so I stayed day and night. My mother and I took turns by Leo’s bedside. We took shifts, sometimes in the accommodation provided and sometimes in the chair in the waiting room. One stayed with Leo whilst the other slept. 

It’s surreal working the night shift in a neonatal ward. Grandma decided the best coping mechanism was to start a journal, take one day at a time, and live in the moment, and so we did. We documented Leo’s journey from day one. These photos and notes saved Leo's life a few days later. 

Over the next 12 months, Leo remained in hospital. We encountered many kind professionals, diligent experts, and even heroes. However, we soon discovered this was inconsistent across the NHS. To Leo’s misfortune, the NHS is contrasted with egocentricity, obstinacy, and negligence.

Many of Leo’s complications in hospital could have been avoided. 

At just five days old, Leo was showing signs of severe NEC. I believe it was caused by the frozen breast milk being left to thaw in a syringe at the bottom of his incubator. The syringe remained in very warm temperatures all day before being placed in his feeding pump. I looked at the photos of Leo in the incubator and noticed over the first five days; his tummy had become swollen and inflamed. I showed the consultant. He dismissed it as my interference in Leo’s care. However, the sour milk had burned a hole in Leo’s tiny intestines, and a few days later, Leo was transferred for emergency surgical procedures to a hospital in Southampton. Klebsiella, a superbug, appeared on his notes. It was a visiting surgeon whose hands were twice the size of Leos's entire body who skilfully managed to clean out his insides and form an emergency stoma. The surgery was high risk, and they had given little hope, but somehow, my little warrior survived. We were soon transferred to the Bristol Neonatal unit, where we stayed for the next few months.

A few months later, a stoma reversal was planned, and Leo was put nil by mouth pre-surgery. However, Leo was still being pump-fed the morning of the procedure, and I questioned this with the nurse, who said she checked with the doctors and it was normal. A few days later, the intestines leaked, resulting in a severe infection. It was now Boxing Day, and Leo was rushed again into emergency surgery. There were no perforations in the intestines, just the putrified milk that had leaked into the abdomen through the scar tissue. After successfully cleaning this out, Leo made a full recovery. However, the long-term damage is the scarring reaching across his belly. Leo was only three and a half months old and weighed three pounds. 

Over the next few months, Leo contacted several more superbugs and had limbs broken from the many times blood needed to be taken. Lines broke. The worst were the ones in his neck and head. Sadly, the scarring right across his belly is still visible. It was an emotional rollercoaster.

I remember when Leo had his first hearing assessment. He was still not the size of a newborn, and we were way past his half-birthday. The hearing test results were not good; he was diagnosed as profoundly deaf. He would not hear a jumbo jet if it flew above him. I couldn’t believe it. We had been playing Leo music in his acrylic dome-like crib since he was a few weeks old, and he responded to it.  

‘Why, after everything Leo has been through, has this reduced you to tears?’ asked Leo’s paediatrician.

I remember my reply,

‘Because this is something you can’t fix, this is something that will affect Leo for the rest of his life.’ I replied. 

On reflection, it was pretty trivial! But I had always had faith that there was nothing wrong with my baby. 

Leo was intravenously fed until he was tube-fed, and that continued all his time in the hospital. The feeding pump pumped the feed into Leo’s stomach, and the first thing he did was bring it back up. Every time. Then we fed again. It was no wonder he never seemed to gain weight. 

We were struggling to get him off his oxygen. They tried everything. Until this was sorted, we couldn’t leave the hospital. His sats were still not stable. We were transferred to Musgrove Park Hospital in preparation for discharge. It was decided that Leo should be put in an oxygen tent with moisture to try and help him breathe. Leo was around ten and a half months old and weighed eight pounds. A short time later, we were blue-lighted back to Bristol. Leo had pneumonia. The consultant told us to expect the worst. It would be a miracle if his tiny lungs survived this. Even his consultant cried that day. 

Leo did recover in the Bristol Neonatal unit, and a few weeks later, it was decided he would be discharged from there. During the discharge checks, it was discovered that Leo had developed something called Pulmonary Vein Stenosis. The worst to come was that it was in all four veins. We were told that this was a very aggressive progressive disease with practically zero mortality rate. This would explain why we were not progressing with Leo’s oxygen saturation. The consultant was happy for us to take Leo home. Five weeks we were given max. Hospice care was recommended again. 

The consultant shook his head. He tried to comfort and make sense of it all. Nothing prepares you for this. Not after we had been through so much. Although we had heard from the night shift nurses a dozen times before: “It would be kinder to turn off Leo’s life support!” We still believed Leo would live—that Leo would pull through regardless!

Before discharge, there was one last thing to try. Leo was quickly identified as a candidate for pioneering surgery to use bladed ballons in his veins to stop the growth on the inside. This surgery had not been attempted in the UK before and was high risk. 

Leo survived the 10 hours of keyhole surgery and returned to the intensive care unit. I sat beside him with his nurse, watching the machine pulse with his tiny heartbeat. 

You grow a sixth sense on the night shift in an ICU unit. A chill ran down my spine, and a shadowy feeling crept across my skin. One of the machines alarmed! It was not Leo’s. I pivoted on my stool. The boy in the bed behind had come in for a routine cardiac catheterisation and was suffering from anaphylactic shock. His body leapt a meter above the bed. Quickly, the curtains were closed around us. A few minutes later, I was ushered out of the unit as teams of scrubs ran to his bed. 

Death is frequent in hospitals; it’s an everyday event. We had witnessed it all too often, sitting beside Leo's incubator. It’s a testament to the staff that they return to work every shift again and again. 

Leo’s cardiologist was optimistic. This might buy some time. Leo was discharged directly from Bristol for palliative home care.