“The Bliss Champions are unsung heroes” – Simon’s story

When Simon and Gen’s baby, Jacob, was born premature little did they realise it would be the start of a long journey in NICU. During this time Simon says the visits they received from Bliss Champion volunteers helped massively to build their confidence and resilience.

Jacob was born at 25 weeks and 4 days with, what we are led to believe, was due to an infection. When the contractions started Gen, my partner, was rushed from Lincoln County Hospital to Hull Royal Infirmary as we were told due to his size, Jacob would need specialist care there. Gen had managed to hang on for two more days before Jacob arrived, but he clearly was not prepared to wait any longer! I had spent the last 54 hours awake, running purely on sugar, caffeine and adrenaline.

The night he was born I’d plucked up the courage to book into a hotel and catch some sleep, however, Jacob decided otherwise. After a shower and a quick two-hour £90 nap, I got the call. “Get here quick, he’s coming!” The labour room was full of people by the time I got there, doctors, midwives, specialists and surgeons, you name it.

With that he was out. This tiny little human, just skin and bone, no life, no noise, no bigger than my hand, whisked away before my eyes. My worst nightmare right before me. He was taken over to the little incubator bed where four doctors worked on him for what seemed like an eternity, trying my hardest not to listen to the “No response”, “low pulse”, “come on little one, wake up” comments.

I forced myself to focus all my attention on Gen, who was also far from ok. I eventually got the call to come and say hello, and there he was. He weighed 850 grams and was wired up to machines. I remember the doctor saying, “It’s ok, you can touch him”. I felt absolute fear and terror that if I did, I’d hurt him. I managed to hold his hand for a brief second and in a teary-eyed way say, “Hello son I’m your daddy”. His entire palm and fingers were only just spanning my fingernail. Then he was suddenly whisked off to NICU to be made stable and I was told I could visit him “later”.

I sat back with Gen, but by this time she too was having problems. The infection that caused Jacob's birth had taken hold and to top it off, the placenta was now stuck. She needed to go to surgery as soon as possible. I was then alone in the labour room with my thoughts and emotions. What do I do now? Where is everyone? How are they both? Just absolute fear flooded through me! Not too long after, the midwife came to tell me that Gen had lost a lot of blood. Luckily, all was ok and she was soon back with me. Fast asleep, but safe.

Around four hours after Gen’s surgery I was taken through to the neonatal unit “red room”, the intensive care section. The midwife showed me round the ward, so I didn’t feel lost or bewildered. She introduced me to the nurse who was looking after Jacob. This is when the emotion took over and the tears, fear, sadness and worry all burst out. Her presence, her calmness and caring aura flooded over me, and I knew it was all going to be ok. The power of a neonatal nurse! She gave me a hug and said, “Right, let’s get you introduced to your boy”.

Within minutes she’d been able to tell me what every wire, pipe, flashing light and bonging noise was for and why he was bathing in a wash of warm blue light. The phrase she used, which I still use to this day for other parents is, “This is going to be a complete rollercoaster ride, he (Jacob) will be doing well one day and then he won’t, two steps forward and one step back”. I spent another three or four days sleeping on the floor of Gen’s room, while she recuperated from surgery, popping in and out between wards seeing my baby boy. Then the journey really began, we were parents… three months before we should have been, with a baby we couldn’t even hold.

We were given a room on the ward so we could be near Jacob. Living two hours away from the hospital was going to be a problem, but needs must. The nurses were more than happy with the 2am visits to see him when neither Gen or I could sleep. Sitting for hours just watching him breathe or wiggle his tongue. The ventilator pumping away, the drip lines beeping and the heart rate monitors bouncing back and forth. If we had questions, the nurses had the answers. Not only were they caring for Jacob, but they knew how to care for the parents too. I cannot explain how much the nurses and doctors helped, just by being themselves.

After a few days, we were introduced to the Bliss Champion volunteers, who visited every week. They were a couple who had gone through a very similar neonatal journey. This helped us massively, being able to talk to a real mum, a real dad, one that knew how you felt and wasn’t just a medical superhero with jargon to suit. They gave us their phone numbers with the advice that if we needed to talk, any time, they were there. They advised we join the same Facebook support groups that had helped them and to “make sure you take photos and record it all so you can tell your story to him when he’s older”, to which I pretty much haven’t stopped.

We were also shown all the Bliss information and support that was available to us, leaflets and a notice board on the wall all about what Bliss does and how they are there to help. Each week we’d see these smiley faces from across the ward, checking in to see how all the mums, dads and babies were doing, and if any of us needed anything. The Bliss Champions are unsung heroes that give up their own time to help others in need.

It was two whole weeks before we could hold Jacob, and even then there was so much care needed. Still attached to the machines, unable to wander around and caress him like you should be able to with a newborn. That feeling though will never leave me. His tiny hands gripping to mum and me, holding tight and him opening his eyes and looking towards her face.

Over the next 15 or so weeks, Jacob was diagnosed with numerous issues. He had a grade three bleed on the brain, a hole in the heart, chronic lung disease, two hernias, Necrotising Enterocolitis (NEC) of the bowel and Retinopathy of Prematurity (ROP) of the eyes. Each one needing individual care and attention. After five or six weeks, Jacob was moved back to Lincoln County Hospital where his care continued from an equally amazing team. Nurses and doctors that are true heroes, in my eyes. And again, a Bliss Champion volunteer that was on hand to lend an ear whenever we needed it. Truly wonderful human beings.

Bliss champion on a unit talking to parents with mum holding the baby

In the end, Jacob managed to clear his brain bleed, NEC and hole in the heart all by himself, he just needed a little more help with the other ailments. A three-day trip to Nottingham at three months old saw good his ROP with laser eye surgery (this is a story in itself, it was an absolute nightmare three days!) and then a two-day stop off at Sheffield Children’s Hospital for hernia repair. Jacob eventually left Lincoln after 106 days of care to go home on oxygen and to join his family and start our journey as a proper family.

I believe if it wasn’t for the nurses and the Bliss family, we wouldn’t be where we are today. The dedication, love and care that was shown not only to Jacob but to us as parents gave us the confidence we needed to get through. There is no way to thank them all other than to say from the bottom of our hearts how grateful we are of you all!

I’d also like to thank the company I work for who were also equally caring and understanding during this hard time. Western Power Distribution management and HR were all so helpful to me and Gen, reassuring and constantly in contact with me until I was ready to return to work.

Jacob is now three years old and a proper little toddler, full of laughter and love. He has shocked and surprised us all by how he’s taken the last few years in his stride. From a tiny little thing to an absolute food monster who would do pretty much anything for cake! I’m sure he’ll have plenty more hurdles in life, but what I can say is he was watched over by angels during his time in hospital.