When two-year-old Bertie Coles became unwell at home, it was a terrifying experience for everyone around him. Mum Jeanette kindly takes some time to share with us what happened…

Bertie's incident

It was Mother’s Day last year and we were enjoying a lovely, relaxed, family day at home. The sun was shining and we loved being in the garden and being at home as a family. Bertie has a rare genetic condition called Sotos syndrome. He seemed a little off colour that day, but nothing unusual and he was happy pottering about playing with his brother Alfie.

We had recently finished decorating our shed into a games room/bar, so we invited our next door neighbours round for a few drinks. It hadn’t been long before Bertie became unsettled, so I went inside to get him some milk thinking he was tired. Usually he would follow me, but on this occasion he didn’t.

When I returned outside, Bertie’s dad Sam was bringing him towards me. He was floppy, with his eyes rolling back and he was shaking – it was the scariest moment ever!

We took Bertie inside the house and were trying to decide the best thing to do; we quickly phoned the ambulance service. We were panicking and thinking whether it would be quicker for us to take him to hospital ourselves, so found ourselves wandering down the path in panic. The call handler told us to get back in the house as help was on its way. It felt like a lifetime waiting for someone to arrive.

When we got back inside, Bertie seemed so lifeless. We carried on talking to the call handler who was absolutely amazing. We told him that Bertie was so quiet and appeared to not be breathing so he advised us to do CPR; something that a parent would never expect or hope to do on their child.

The arrival of the ambulance crew's and help

Before long, the first crew arrived, followed by another. Until then, we had not met any other Sotos family, but unbelievably, one of the paramedics had a sister with the same condition. We heard them engage in conversation and they mentioned the word HEMS, asking if there was one nearby. At that time we were unsure of the word, but now we know it stands for Helicopter Emergency Medical Service and they were asking for the air ambulance.

Everyone around us was busy, with our little Bertie motionless in the centre of it all.

The Dorset and Somerset Air Ambulance team arrived and were like angels from the sky; quickly they made a plan. Because the helipad at Bristol Children’s Hospital was due to close soon, they decided to intubate Bertie in the ambulance and stay with him en-route to hospital. This also meant that we would have the ambulance crew and the air ambulance crew beside us the whole time, which made us feel extra safe.

As I sat waiting nervously in the front of the ambulance, I remember the air ambulance pilot talking to me and explaining that it would be busy when we arrived at hospital, but reassuring me that everyone would be there for Bertie, which really helped.

The journey was long and I can still see the blue lights flashing across the motorway as we made the steady, yet urgent journey to Bristol. The air ambulance crew took amazing care of our little boy during that trip, but they also made the time to explain what was happening during every stage of his care.

Bertie's stay at Bristol Children's Hospital

Bertie was handed over to the team at Bristol Children’s Hospital and went off to have lots of scans. I found myself waiting for him, sitting in the parents’ kitchen, trying to work out what just happened.

The staff in the Paediatric Intensive Care Unit looked after Bertie amazingly. In total, he spent four days there and we couldn’t wait for them to wake him up and hear him chatter away once again. They started to extubate him on the Wednesday and at first he seemed so weak, but he soon made his voice heard, which was amazing.

On the Friday we went back to our local hospital and on the Saturday we were given the choice to stay for another night or go home. We decided the latter, so that Bertie could continue to recover in his own space. On Sunday, he made it (with a bit of help) to his favourite part of the house, which is our washing machine and although it took a while for him to gain his strength again, he has now made an amazing recovery.

Although Sotos syndrome can cause seizures, it was deemed that on this occasion the viruses had attacked his body and it just couldn’t cope, which triggered the seizure that he had.

Bertie and his families aftercare

A week after the incident we had a lovely surprise. We were sat at home after doing the school run and Bertie was playing. The phone rang and it was the Patient and Family Liaison Team from Dorset and Somerset Air Ambulance, checking in to see how Bertie was and how we were all coping. This follow up meant so much, as did the bravery award that he received in the post which is very precious to us.

We are so thankful to everyone who played a part in helping us that day. Our neighbours who were there for us by collecting a defibrillator in case we needed it and picked up the air ambulance crew from the park, our families who helped us throughout Bertie’s stay in hospital, the ambulance crew that chose to react to our call, rather than head home as they were finishing their shift and the whole team at Dorset and Somerset Air Ambulance for their care on the day and the aftercare thereafter. You will all hold a special place in our hearts and we will forever be grateful.

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VIEW FROM THE CREW

Bertie’s story really captures a parent’s view when something of this kind happens to their child. Our thanks go to Jeannette for sharing her experience, enabling us to share it with you.

From a medical point of view, any seizure activity in a child can indicate something abnormal within the brain and with Bertie not waking up from a seizure as we would hope, this made it clear that he needed specialist care. There were signs on scene that Bertie may have had a virus or infection and when a child becomes unconscious from that, it’s critical they get to a paediatric specific centre with paediatric intensive care capabilities as soon as possible. Intubating Bertie on scene allowed the team to take control of Bertie’s conscious state and breathing, to prevent his condition deteriorating further. We are so pleased that he is now doing so well.

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The DSAA team that attended Bertie’s incident were: James Keegan, Amy McGufficke and Scott Armstrong. Also in attendance from the ambulance service were: Laura Walker, Anna Macklin, Chay Farzaneh, Neil Taylor, Kimberley Braid, Annabelle Drennan and Samuel Clouter.

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NEXT: Sam's Story