“We focus on the positives and work out the negatives” - Kate’s Story

At 17 weeks pregnant, it was confirmed that I had PPROM (preterm prelabour rupture of membranes) at a scan. The scan showed that I had extremely low fluid and that I had actually been expecting twins and had lost one earlier on. I got told to go home, take it easy and come back in twice weekly for blood tests to check for infection.

On 23 December, at 19 weeks and four days pregnant, I went to visit my family in Manchester. There were no signs of infection and I felt really well, but as I turned up on my mum’s doorstep and I was suddenly heavily bleeding.

I was admitted into their local hospital where I was told to expect to go into labour in the next 48 hours or to be induced due to loss of blood, with both scenarios resulting in us losing the baby. Neither of these happened and our miracle stayed put!

Fast forward eight weeks and four hospitals later. None of these hospitals were local to my home, so my little girl stayed with my parents and my husband was at home trying his best to carry on working so that we still had money. Our baby was finally born on 3 February 2018 at 27+3, weighing 2lb 8oz via emergency section because I had sepsis.

At first, our baby was showing really good signs and was relatively easy to intubate. They whisked him off to the NICU, but then, my husband was asked to go to speak with the doctors.

We were told that our baby had taken a massive dive and they didn’t expect him to survive longer than a few more hours. My heart sank and I felt the entire room staring at me.

I couldn’t look at my mum or my husband - they were both obviously distraught and trying to be strong for me, while I was doing the same for them. I wiped away the first sign of a tear and said, “thank you for telling us - can I see my baby now, please!”

Somehow the amazing staff got my bed into the NICU so that I was able to see our boy. I thought I had prepared myself for how small he was going to be but how wrong I was! I have never seen something so small, but still so perfect. No eyelashes or fingernails yet, and skin so thin that it was see-through. William was on the maximum assistance possible, and they arranged an emergency baptism for him.

I had an overwhelming feeling that he was going to make it in the end and soon enough, with us sitting by his side, things started to improve. The minutes turned into hours and before we knew it he had made it through the night.

For the next 24 hours, my body was exhausted so I was back to being monitored, leaving daddy trying to juggle everything. A few days went by of just waiting and hoping, and eventually, things seemed to be steady.

One by one family came to see him, each shocked at the size of him, how poorly he was and the amount of equipment surrounding him. Trying not to cry but equally just heartbroken and sobbing. But then in comes beautiful little Ava Lilly, the world’s best big sister and brightens up everyone’s spirits.

Being told that I could finally hold our boy was exciting, nerve-wracking and everything in between. It was like a military operation getting him out of the incubator and transferring all of the wires and tubes, but it was all worth it for two minutes of him being tucked up inside my top, with his tiny little head snug under my chin and to smell him up close!

We thought we were experienced parents this time around but learning to clean a baby and change their tiny nappy all around wires and cables, as well as trying not to hurt him, was a whole new challenge for us. But we did it together and became a well-oiled machine working together.

Over the next few weeks, more issues were presenting themselves, including NEC which left his stomach looking like a balloon about to burst and resulted in a transfer to Manchester Children’s Hospital. They then discovered two bleeds on the brain which were graded at the highest level.

We were transferred again home to Arrowe Park and then over to Alder Hey for life-saving brain surgery - all before he was even ten weeks old. Each transfer was a risk in itself and usually resulted in a big step backwards for him, but all were needed.

We were excited by every milestone, being able to keep a dummy in his mouth and breath at the same time, drinking from a bottle, being able to wear clothes, being held for longer than two minutes, being held by other people - each one just as important as the medical side of things.

When William was moved up to the Children’s Ward, we felt that we were finally able to be parents and get used to looking after him ourselves.

At four months old William was finally allowed home, with his oxygen and other drugs! It was a scary step but amazing. The little things that go into bringing home a poorly baby are just endless - daily visits, appointments and the ‘hospital set up’, that takes over the hallway and kitchen to ensure safety and routine.

William’s first year at home consisted of regular admissions back into the hospital. Ava’s first day at school photo is taken in the actual hospital - but that was life for us, and we made the best of it.

William is nearly four years old now and we’ve had five more surgeries, he is still on oxygen all day every day, he has hydrocephalus (fluid on the brain) in multiple areas, cerebral palsy and other minor issues. But to look at him it’s like another child. He has done everything that they said he never would, just in his own time and his own way. He’s walking, talking, going to school, funny, caring, happy and just a gorgeous little boy who loves life.

It’s been a long and difficult process that is a forever situation and one that we just go along with. But we are lucky - William is here! We are happy and grateful and would not change him for the world. We focus on the positives and work out the negatives. Life is easier when you have a cheeky face looking back at you.

William Alexander Johns, you are a little miracle and continue to fight every single day! 120 days in the hospital and 163 days in the hospital from when mummy got admitted. Six months of our family being apart. You make everyone proud - thank you for making us the family that we are.