Ted's Story
"I don’t think our family would have got through the stay as easily without the support from SSNAP.."
"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, Aylesbury, 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 Teds heart rate was dropping so we were sent for a Cat 2 c section around midnight. Once we were in theatre Ted had 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 born at 8.00am and 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 called Hypoxic- Ischemic Encephalopathy(HIE). This means that the brain can swell and cause damage. They had already started a treatment called therapeutic cooling which helps to protect and heal the brain in these situations. Stoke Mandeville had a machine
to start the cooling process and help babies in this situation thanks to funding from a legacy left to BURPS. This is the charity supporting Stoke Mandeville NICU (who I now also volunteer with). The John Radcliffe Hospital were able to provide a bed for Ted to continue the treatment.
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. We actually chose his name, Edward James, in the lift on the way to see him. I couldn’t allow him to leave the hospital without a proper name.
He was taken to the JR by the fabulous SONeT team. I was fascinated to find that there is a special ambulance designed for moving babies in NICU who need incubators and other special care. I followed on the next day.
When Ted arrived at the JR my husband was greeted by Kevin and Amitt, two of the
Doctors caring for Ted. And then he also met Christine, one of the fabulous team at SSNAP. I don’t think our family would have got through the stay as easily without the support from SSNAP and especially Christine (who I often felt didn’t actually go home as she always seemed to there when you really needed her) .
When I got to hold him for the first time it was amazing. 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. If you ask him he always says he was calm on the surface but panicking underneath. He also said the team at SSNAP enabled him to be there for me and be really strong because he could then go to SSNAP for the support he needed.
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 around 10pm 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. So Ted got another trip in the SONeT ambulance! He must have really enjoyed the care!
Around 2am once we were settled back at the JR the on call neurologist was able to come and speak with us more about the bleed and reassure us that while it was cause for concern, Ted was not in immediate danger and the best thing for now was to get some sleep. We were given a room in the hospital again so we could stay. I always remember sitting the next morning cuddling Ted when Christine walked in and did a double take! She was so surprised to see it. Once we had explained what had happened the first thing Christine asked was ‘Have you eaten? Let me get you something to eat’. Made me smile how caring and thoughtful SSNAP are. It might seem silly but in fact we hadn’t eaten in nearly 24 hours and SSNAP know that’s a problem pretty much every family has at
different points and are always on hand with a listening ear, something to eat and most importantly a cup of tea!
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. Kevin and the consultant neurologist spent a long time with us explaining everything and they were even drawing diagrams to make sure we understood what was going in our little boy’s head. In true Ted style, he waited until we were at the point where surgery was a very real possibility in the next 24 hours and then the swelling started to subside.
Ted is a very lucky boy who was well cared for and 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.
Both myself and Stewart can be found supporting both BURPS at Stoke Mandeville and SSNAP at the JR as we owe both hospitals so much. Its such a joy to help other families when they need it and share our story. We took great comfort in reading other families stories when on the unit and benefited a lot from all the volunteers work. You'll find us building websites, baking cakes, stuffing envelopes and running half marathons,
The future looks bright for Ted with all the therapists giving him thumbs up on his progression but if he hasn’t have received all the care and support from the moment he was born then this story could be very different. The medical teams and charities that work in both Stoke Mandeville and the JR really are angels. Our little SuperTed is an amazing little man and we are so looking forward to seeing who he grows into".