Louis' Story

"When my waters broke at 27 weeks I could not wrap my head around the fact that the Christmas tree was still up and yet my baby wasn't due until after Easter. We rushed into hospital but didn't quite make it inside the building; baby Louis was born in the stairwell of the Royal Berks with not a single other soul in sight to assist us. Once help arrived on the scene he was stabilised and we were quickly transferred to the John Radcliffe in Oxford by Paul, our fabulous ambulance driver, and the SONeT team.

I was in a state of shock and terrified about being moved so far away from all of our family and friends in Berkshire, but when we arrived the ladies from SSNAP almost immediately scooped us up and helped us to settle in. They set us up with some essentials (the idea of packing a hospital bag had still seemed a long way off until that morning) and made sure that we had something to eat - a recurring theme!

We quickly began to realise why we had been transferred to the JR once we saw the incredible medical team in action. At the centre of everything was the emphasis on family integrated care and we were amazed at how much parental involvement and skin to skin was encouraged right from the offset. We were made to feel part of the team and never just spectators who were getting in the way of our baby’s care.

This was just as well as Louis' journey was not a smooth one. On the day after his birthday he suffered an extensive brain bleed (a grade 4 IVH on the right side and a grade 2 IVH on the left) the clotting from which resulted in hydrocephalus - a build up of fluid on the brain. He then went through seemingly endless procedures to try to manage this fluid including a series of ventricular taps, wash outs, and external drains. This was complicated by the fact that just over a week after the brain bleed Louis had a spontaneous perforation of his bowel which meant that he had to have emergency surgery on the unit to form a temporary stoma.

The stoma worked really well but did mean that plans to have a permanent ventriculoperitoneal shunt to drain fluid from his head to his tummy had to be delayed until the stoma was rejoined. Once the general surgeons worked their magic and put his gut back together we merrily waved goodbye to the leaky stoma bags and looked forward to what we thought would be the last surgery: the fitting of the shunt.

Amongst these difficult days and week some moments of celebration were incongruously scattered: birthdays, Valentine's day, mother's day, Easter. Festivities were far from our minds at the time but SSNAP went the extra mile to make sure that we still managed to find joy amongst the madness, spreading gifts and cheer through the unit and providing some respite from the otherwise constant rumbling worries we had.

Meanwhile Louis unfortunately continued to do things on his own timescale and took a very convoluted route to having a working shunt. After various blockages at both the head and tummy end and a brief attempt to move the shunt to his heart the neurosurgeons and general surgeons then worked together to put a shunt in place that finally seems to be doing the job.

SSNAP's unwavering support throughout our turbulent time in hospital became particularly important to me once my husband, Laurence, had to return to work. Crissi, Lauren, and Kerry always seemed to know instinctively when I needed a shoulder to cry on and when a distraction in the form of chatting about my dog would be welcomed instead. I looked forward to their visits each day and they built up a relationship with our families too on their regular trips to Oxford.

One particular morning Louis was rushed in for emergency surgery after a worrying night where I felt I'd really had to push and advocate for Louis' condition to be taken seriously by someone outside of his normal medical team. As I rushed outside for phone signal to call Laurence and tell him the news I ran into Crissi just as she was arriving at work. She had barely even got out of her car before I broke down on her with a mixture of relief and despair. She comforted and consoled me and reiterated the importance of mother's instinct, reassuring me that I'd done the right thing by making sure our voices had been heard. She realised I hadn't eaten and so brought me breakfast and water while I waited for Laurence to rush back to join us at the hospital. This is just one example of the many times the SSNAP team have held us up in some of our darkest moments.

We are now home after over 5 months in hospital and it's hard to believe that the baby I'm cuddling as I write this is the same tiny, vulnerable boy who arrived in Oxford on the 5th of January. We are so proud of all that he has achieved despite the challenges thrown at him and know that his progress is in no insignificant part down to the support of SSNAP. For family integrated care to work as well as it does in Oxford it needs not only a truly outstanding team of medical professionals, but also parents who are well nourished both emotionally and physically. SSNAP made sure we felt empowered to advocate for our baby and supported us to have the strength and resilience to keep showing up for him every day.

I remember reading these stories by Louis' incubator, searching them for similarities to our own experience and wondering if we'd ever get to the other side. If you are still in the middle of your journey please know that one day you will find yourself looking back at the mountain that is currently ahead of you, marvelling at how you ever managed to scale it and the amazing people who held your hand through the climb."