‘You can’t expect to be the same person you were before‘ - Andy’s story

You never really think about prematurity until it happens to you.

My wife Cathryn and I were expecting our first baby and were looking forward to becoming a family. When Cathryn was 29 weeks pregnant, she experienced some bleeding so we went to our local hospital in Poole so she could get looked over.

A scan showed that there had been a placental abruption and that Cathryn was going to require an emergency c-section. There was some discussion about whether to send her to a Level-3 hospital to deliver the baby but it was decided that there wasn’t going to be enough time and that the baby needed to be delivered as soon as possible in Poole.

We felt like someone had dropped a bombshell on our whole world. No one really tells you what you might face when there is a complication in pregnancy. I suppose people don’t want to scare you but actually it means that thousands of people a year aren’t properly prepared for the challenges that await them and are completely blindsided when something goes wrong.

My son Toby came into the world weighing a tiny 720g. I felt the overwhelming feeling of joy and happiness at becoming a dad but also extremely worried seeing how small Toby was. Toby and Cathryn were very quickly transferred via ambulance to Princess Anne Hospital in Southampton. I had to drive myself there in my car. It was one of those journeys where your mind is fraught and I was carrying every worry in the world on my shoulders.

When I got to Southampton, I was immediately reunited with Cathryn who was in her own room and together we waited to see our son. It was all so incredibly surreal; we’d only briefly seen Toby after he was delivered and now here we were in a room miles from home without him.

After a few hours, we were taken to the NICU to see Toby again. One of the most overwhelming things about going into the unit was seeing so many fragile babies covered in wires needing specialist care. We were shocked by the number of machines and became obsessed with checking the stats and listening to every blip the monitors made.

Toby spent almost all of his 23 days with us at the neonatal unit in Southampton. He made excellent progress in the early weeks of his life. He developed his own little personality – kicking his foot outside of his blankets and burping bubbles of milk into his feeding tube. When he behaved himself the nurses called him Toby-licious and when he was playing up they nicknamed him Toby Toe-rag. When my sister-in-law came to visit, he’d wind her up by keeping his eyes closed whenever she was in the room and opening them the instant she left!

I was able to hold Toby for the first time when he was around eight days old and provide kangaroo care – it was truly incredible to hold my son in my own arms after such a long wait.

Toby had been doing so well at Southampton and it was decided to transfer him back to Poole 21 days after he had been born. Cathryn and I were incredibly excited to return to our local hospital because we’d also be able to stay at our own house. More importantly, we thought this was a huge milestone and that it wouldn’t be long before Toby would be home with us; maybe we were slightly naïve in that thought.

After Toby was transferred, we went back to our home slightly earlier than usual to allow him and us to rest after a tiring day. A couple of hours later the phone rang. Something had gone incredibly wrong.

Cathryn and I rushed back to the hospital and a doctor sat us down. Toby had developed necrotising enterocolitis (NEC) – a serious condition in premature babies which affects their intestines. We were told that Toby was exceptionally poorly and that he was going to be transferred back to Southampton for an operation to try to save his life.

It was utterly unbelievable. Just hours before we had been thinking about Toby coming home in the near future and now, as we waited to be transferred, we were in a position where he was fighting for his life. We felt completely helpless and broken as the doctors in Poole tried desperately to get him in a comfortable enough position to return to Southampton.

Once we were back at Southampton, Toby was taken in to surgery to repair his bowel. The operation seemed to have gone well although the surgeon said we’d have to wait to find out if it had been a success.

On 27 August, Toby’s condition deteriorated significantly. We had to have the conversation that no parent should ever have with the doctor in which we authorised end of life care and we knew that our time together wasn’t going to last much longer.

The staff ensured that this traumatic day could at least be spent building some final positive memories of Toby. We went to a family room in the NICU to spend our last hours together. The staff had lots of suggestions of what we could do with Toby to help us make memories together. We took his hand and foot prints, we read to him and cuddled him. It was all very surreal but comforting too. We gave Toby a bath; he hadn’t been properly cleaned since he was born so he was absolutely filthy and this made us smile. In that moment of absolute despair, it was amazing to have happy moments with him too.

Those first few weeks after losing Toby were the very worst. It was a period of total devastation and we were unsure of how we could go on. We also felt stuck in limbo because we had been planning to move to Wales ahead of Toby’s original due date and now we were without him. When we did eventually move, it was actually the best possible thing for us at that time. It gave us time to grieve alone together.

Four years on, Toby is still very much with us. One of our coping mechanisms was to paint a caricature of Toby in our minds. Whenever something serendipitous happens or things fall into place in a surprising way, we say to each other: “I bet Toby is doing this.” We also have a memorial bench dedicated to Toby which overlooks the sea in Bournemouth. When we go back there we like to sit and watch the waves and think about our boy.

Another lasting legacy that Toby will always have is that both Cathryn and I have become very involved in raising money for charity. Initially we did this for the unit in Southampton to say thank you but now we are helping to fundraise for research into finding a cure for NEC. We have recently opened a Precious Star Fund with Bliss so that we can help fundraise for the research that they support. In this way, we hope that Toby’s life will impact the lives of babies for years to come.

If you have recently lost a child, I would tell you to allow yourself the time you need to grieve. Be kind to yourself; the very worst thing has happened and you can’t expect yourself to be the same person you were before.

Andy Greeves is a freelance journalist based in Wales. He has recently written his first biography ‘Harry Kane: Golden Boy’ which he has dedicated to Toby. His book can be purchased here.