Katy, Stewart and Ted

We were looking forward to the birth of our son so much. We had planned for what we thought was every eventuality, we had been to some awesome antenatal and hypnobirthing classes and felt confident and positive.

Stoke Mandeville were monitoring us closely as Ted’s ‘due date’ was the 22nd May and we were into June and he hadn’t made an appearance yet. My blood pressure had drastically increased and so we decided to start the induction process. Things were going fine all be it slow but the team were happy with the progress. It became apparent that’s Teds heart rate was dropping so we were sent for a Cat 2 c section around midnight. Once we were in theatre Ted has stabilised so we made the decision to continue the labour.

In the morning Ted was in distress and we were upgraded to a Cat 1 c section. Ted was out in about 12 minutes. The main thing I remember about this was the silence in the room. It was a sound I will never forget. Ted wasn’t crying. A special team came in to get Ted breathing and he was taken away immediately. I didn’t get to meet him which was heartbreaking but I’m extremely grateful the team acted how they did. My husband got to go and meet him once Ted was settled.

Shortly after his birth the team came to speak to us and explained that Ted had been without oxygen for an extended period of time and therefore was at risk of brain injury. They had already started a treatment called therapeutic cooling which helps to protect and heal the brain in these situations. Thanks to equipment provided by BURPS this process could be started immediately giving Ted the best chance at the future we had imagined he could have.

I was taken to meet Ted for the first time although I couldn’t hold him due to the equipment but it was magical watching him recognise my voice when I gave him his name and he gripped my finger so tightly I knew we had a feisty little fighter on our hands.

He was taken to the JR for special care and I followed on the next day. When I got to hold him for the first time it was amazing. Again due to all the equipment it wasn’t how I imagined but the team at the JR worked so hard to make it as nice as possible and we managed some skin to skin time. It couldn’t be for long though as Ted’s temperature had to stay constant.
I started shaking while holding Ted and initially I thought it was emotion but the nurses caring for me were concerned. I became quite poorly as I had an infection. Thankfully my husband was given a room at the JR so he could be with both of us. I still have no idea how he handled the situation so well. As soon I was able to,
the team were amazing at getting me to see Ted as much as I was able to. I desperately wanted to breast feed which ended not working out for me and Ted but the time put into supporting us from both hospitals was fantastic.

We were then told we were going back to Stoke Mandeville and that Ted would soon be discharged as he didn’t need to be in hospital any more and could be cared for at home.

We went back to Stoke Mandeville where Ted was sent for a further MRI scan. We went home to spend what we thought would be our last night at home alone.

We received a phone call to tell us that the MRI scan had shown that Ted had a bleed at the back of his brain. He needed to be transferred back to the JR to be looked after by the neurologist.

Hilary, one of the NICU nurses, was looking after Ted that night and we went in to help get him ready for the transfer and as you can imagine, it was very emotional. Hilary not only did her job with Ted but she was incredible at looking after us as well. She calmed us down and got us ready to make our own journey back to the JR.

Ted had to undergo a lot of monitoring as his head had swollen and there was the possibility he would need surgery to relieve that pressure.

Ted is a very lucky boy and surgery was not needed so he was sent back to Stoke Mandeville and shortly after he was discharged. He has been looked after for the last year by Emily and Jo the outreach nurses who I don’t think I’d have got through this year without them. He still needs regular check ups and is looked after by OTs, physio, SALTs and a paediatrician. Thankfully he has been discharged from neurology following his last MRI.