My second child was born prematurely, at 25½ weeks. It was a very quick delivery and he was clearly poorly — he looked very red,raw and skinny. The doctors whisked him away immediately to ventilate him. My husband, Robert, and I were concerned but cautiously optimistic. The first indication that something really wasn’t right was when the doctors announced that he needed to be taken to a bigger hospital where there were neonatal specialists and intensive-care facilities.

Robert and I drove there in a stunned state. Neither of us wanted to talk about it, to make it more real, but I remember saying: “We’ve got to give him a name.” If he wasn’t going to make it, he couldn’t die without a name. We called him Theo. Once at the hospital, we went to Theo’s bed — he was lying very still, covered in wires, and he had tubes down his throat and nose. The doctors were saying: “This isn’t great, we’re not happy, his levels aren’t going up.” He didn’t seem to be in any distress, but he was on morphine to stop the pain and to stop him fighting the machines.

After a couple of hours, we were asked if we’d like to get him christened — we realised it really wasn’t good news. We agreed, and asked to bring our three-year-old,

Oliver, and my mother. Meanwhile, the doctors explained that they thought Theo had had a massive brain bleed — they didn’t think he was going to make it. I just felt cold shock. However much you think that something is on the cards, the reality is a kick in the stomach. We asked them how sure they were. They said: “Sure.” We were then presented with the choice: “Either he dies on the machines, where he survives for longer, or we take him off everything except the morphine so you can all cuddle him.”

The doctors left Robert and me to talk. Logically I understood that Theo was drugged up to his eyeballs and not feeling any pain, but viscerally, I just didn’t want to prolong his suffering unnecessarily. I experienced a very strong conflict between my logic and my feelings. We didn’t ask how long he would have survived on the life-support machines, but it could have been days or weeks. It’s amazing that the technology is there, but you need to use it wisely.

Neither of us thought, we must keep this baby alive at any cost. With a massive brain bleed, there would have been serious brain damage had he survived — his quality of life would have been in real question. We would have taken on Theo on any terms, but we didn’t want to be selfish. We wanted Theo to die in our arms, not among the machines. We didn’t feel it was a huge choice to turn off the life-support machine, but my heart goes out to the parents of baby RB [who are caught in a legal battle to keep their one-year-old on a life-support machine]. It’s a heck of a situation to be in, and only one that they know how to resolve. Talking was what got us through.

My mother and Oliver then arrived, Oliver running down the corridor asking: “Is Theo going to die? Is Theo going to die?” He kept repeating the question, as if eventually the right answer would come. Robert and I both went into parent mode. Oliver proved a useful distraction — you can’t dwell on your own thoughts for long with a three-year-old. The chaplain then baptised Theo, which was heart-breaking but I didn’t cry because I had to keep strong for Oliver. There was also that horrible feeling of, if I let go now, will I ever get it together again? I didn’t cry until after he died.

At about 12.30pm, the doctors took Theo off the machines, wrapped him in a blanket, gave him to me and showed us into a side room. It was awful to arrive in that room knowing that Theo would not leave it alive. There was an unsettling calm, and a real sense of the relentlessness of time — we just wanted to stop everything so we could give a lifetime of love to our son. Going through my mind was a sense of urgency that I had to remember all of this. I didn’t ever want to forget his face. We were talking quietly to him, stroking his hair, seeing how perfect his toes were — it was that bit where you fall in love with your baby. But there was no response. It was very intense in this small, very hot room. We were all anxious for each other to get a turn to cuddle him. Each time the doctor came in to feel for his heartbeat was terrifying. I was on a knife edge, vacillating between wanting it all to be over, but also wanting it to never happen.

Theo died at 2.30pm, 17 hours after birth. The doctor came in and listened to his heart again, and shook his head: “He’s gone.” It was neither a shock nor a relief, just an acceptance. They put him in a moses basket, tucking him up like he was asleep, and took him away. The doctors then explained that they thought he’d died of a group B streptococcus infection. We’d never heard of it, but they explained that it’s a normal, symptomless bug that lives in the vagina of about 25% of women, which newborns are more susceptible to. Theo had caught it inside me.

We all went home, and that night, when Oliver was asleep and I didn’t have to be strong for anyone, I cried and cried. It was many weeks before I went to sleep without crying. I missed him terribly; I was so used to him being part of me. When Oliver was at playgroup, I would howl on the kitchen floor, wondering if I could ever get up again. We now had the funeral to organise, and that harrowing task of calling up people, saying: “You know how I was pregnant ...?” We looked into the infection, and decided to set up a charity — it was something we could do that meant at least one family woudn’t go through this. I suppose it was channelled grief, an attempt to try and bring positivity out of something so dreadful.

I fell pregnant two years later, and I was a basket case of nerves. We knew the infection was preventable and that there was a minuscule risk, but every twinge I felt, I’d freak. I was overcontrolling — virtually everyone I bumped into in the hospital was handed a leaflet about group B strep. It was altruistic, but also selfish. Knowing that they knew gave me comfort. My daughter, Millie, was born fit and healthy.

I still miss Theo 13 years later. I look at my kids now and there should be three of them. I always bake a birthday cake on Theo’s birthday. It’s just something I have to do. Through the charity, I’ve seen a number of families break up when a baby dies. It’s a terrible burden on a couple. You just have to keep talking to each other, and keep listening. If you love someone, you have to make it through somehow, and remember that you’re not the only one. The death of a baby affects so many people.

For more information and support on group B streptococcus, visit gbss.org.uk

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