I hope our story makes another family feel they are not alone
We always knew we wanted a family but we did struggle to conceive. We had assisted fertility and were about 2 months from an IVF referral when I got pregnant which, after 2 years trying, felt like we’d made it. That wasn’t the case.
It was a low-risk pregnancy. My mother-in-law is a retired midwife so I had extra support and we planned a home birth.
Our premature arrival
On January 3rd I went to the assessment unit because I’d had a tiny smear of blood, they did a speculum and said it was nothing to worry about.
The next day I had cramping but explained it away as being due to the speculum. When the cramps were every 3 minutes, I called the assessment unit but they said, at 27 weeks, not to worry, to take paracetamol and go to bed.
My gut told me something was wrong but I wanted to believe them when they said not to worry. My husband went to get paracetamol. When he got home, my waters broke so we drove straight to hospital.
We made it as far as the car park when I felt the baby was coming. It was 4am, deserted so Laurence ran for help. When he came back with a porter, I was alone in the stairwell, holding a tiny baby.
The porter raised the alarm and a crash team of midwives and A&E staff came, cut the cord and took Louis off for resuscitation and gave him a surfactant to open up his lungs.
I really thought it would be a case of putting him into an incubator and watching him grow. I had no idea how turbulent this world can be.
In the baby unit
Seeing Louis on the ward, with a breathing tube, was a shock and the consultant was clear he might not make it. They moved him to Oxford 12 hours later where we were embraced by incredible nurses and a charity that supported us for the next 5 months. We immediately felt this place would give him the best chance.
I’d travelled in the ambulance with him and the driver from the specialist neonatal and paediatric transfer team, Paul, prepared me for NICU, told me success stories of smaller babies who had made it, reassured me. He visited all the way through our stay, it’s people like him I’ll remember forever.
Louis had 2 brain bleeds in the first few days, a grade 4 on the right and grade 2 on the left, and that’s when they first mentioned hydrocephalus, a build-up of fluid on the brain.
Day 9 was probably the toughest day of all. He was grey, didn’t look right in the morning. The consultants did an x-ray, which looked fine, but an ultrasound showed a spontaneous perforation of the bowl.
He was so vulnerable they closed the ward and rushed the surgeons to him to perform a temporary stoma. The surgeons were brilliant but it was clear they did not know what the outcome would be.
I remember kissing him before surgery, not knowing if we were saying goodbye forever, then just sobbing loudly, thinking I’d never stop.
He wasn’t a kilo at that point so the risk was high. After 4 hours, the surgeon eventually came to see us and said we’d need to ‘wait and see’. So much about this journey was ‘wait and see’, which was agony.
The surgeons seemed positive so it was then about him getting big enough, around 2.5 kg, to reverse the stoma procedure. I didn’t even know a stoma was reversible.
Bowel issues and hydrocephalus
The hydrocephalus was the defining thing for the rest of our stay. Luckily we’d been in hospital so it was diagnosed quickly. They first tried a ventricular tap, a needle through the soft spot to draw fluid. He had a few of those, then 3 separate ‘wash out’ surgeries, pumping litres of fluid into the brain to remove clots that cause a build-up of fluid. It’s ‘aggressive’ and they were clear he was he might not survive.
It wasn’t enough to stop fluid building so they decided on a shunt. The first choice is usually the tummy but his stoma meant complications and possible infection. It was having both things together that felt like the biggest problem.
Until Louis was big enough to reverse the stoma, we had an external drain from him to a container at the side of the incubator which had to be levelled at the right point. It made breastfeeding challenging but we got through it.
He also got meningitis twice but, again, we were in hospital so it was caught very quickly and there were no repercussions.
The stoma was reversed in March and we were lucky it worked first time. Now, you’d never know he’d had any bowel issues.
He was 3 months old when they first attempted a shunt for the hydrocephalus, which only worked for a couple of days. I’ve lost count of the number of shunt revisions we had that first month or two.
Eventually they discovered it wasn’t working due to scar tissue from bowel surgery wrapping around the bottom of the shunt. That was horrific, back to the external drain and the fear these two things weren’t compatible.
Two weeks later they decided to try putting the shunt into a main artery in his neck to drain fluid that way and it worked. We were discharged but I felt something wasn’t right, the consultant listened to my concerns and, 3 weeks after leaving hospital we were back for more surgeries.
We ended up back with an external drain and I lost the plot because it felt there was no permanent solution available. Then the surgeon who did his bowel op, who I trusted implicitly, suggested going through his tummy again. That shunt worked and is still there now.
Take all the support you are offered
Louis was 6 or 7 months before I really believed it was possible he would get through. Looking back a year ago, I’d never have believed we would be getting ready for his first Christmas.
To date he has had 17 operations and countless other non-surgical procedures - but he has shown us the true meaning of resilience and brought so much love and joy to our lives
I’m lucky I saw a psychologist in hospital every week which helped me process everything. It’s important to take all the support you’re offered as you face the toughest challenge of your life, whether that’s the psychologist, my parents looking after our dog, the hospital charity who made sure we were eating or the friends who kept me sane by visiting us in hospital.
It’s also important to trust the mother’s instinct. I’m 100% glad I fought my corner because, although surrounded by medical experts, I was the Louis expert.
Tommy’s was a vital source of information as I knew so little about premature birth and complications. There’s so much on the internet, I knew the information from Tommy’s could be trusted and it was also accessible and written in a way that’s honest but not frightening.
I remember sitting by the incubator, going to Tommy’s website, desperately trying to find a story that made me feel it wasn’t just us. I couldn’t find one about both bowel issues and hydrocephalus but I know how much it would have meant to me. I hope our story makes another family feel they are not alone.