Over the course of the last year, I guess I’ve put the 4 days leading up to William’s death into chapters in my mind.
The chapter which keeps me awake at night; the one that has left me with flashbacks and PTSD is the one I’ve wanted to understand as much as possible about, and it is titled ‘16:44pm- 18:10pm’. The 90 or so minutes where William became critically ill. The chapter which happened in my house and required 2 of the 3 emergency services.
I’ve walked past the ambulance station which is about ½ a mile from my house regularly in the past year, and many times I’ve wanted to go in and ask to see the team that kept my baby alive on 13th November 2021. (It’s a good thing that I didn’t, they work shifts and not all the team are based at this location). But you get the idea that these incredible people have been on my mind daily for 12 months. I’ve wondered if they’re offered support after such a traumatic job, I’ve wondered if they’ve thought about us, and it sounds stupid, as they were in my house and I’ve spoken to them face to face, but I’ve wondered what they look like. I remembered one relatively well, but I still wasn’t sure. That day was a blur, a fog over my eyes, a surreal and outer body experience. A moment when I thought ‘this isn’t happening, this can’t be happening to us, to William’.
I’d spoken with our Death Review Nurse in the summer about having the opportunity to meet with the paramedics, I explained that piecing flashbacks together and being given the opportunity to talk through the events might help me, she agreed, and she made contact with them. I wanted it to be made crystal clear that there wasn’t going to be any attack from our side. We’ve never considered that there was negligence or that mistakes were made by the crew that night, in fact the complete opposite!
It took 4 months from me actually asking for the meeting to securing a date, I delayed it as I wasn’t ready to face the conversation that I knew I wanted to have. But a date was proposed, and it happened to be in November, I could have pushed back and said no, not a few weeks before William’s 1 year anniversary, but actually my feelings are very much on the surface and it’s all I’m thinking about. I relive the minutes, the hours, the days of that week, so I might as well talk about it with the professionals who were there. Was it going to feel like therapy, honestly who knows?
Arriving at the meeting, which was set for 10am, I felt surprisingly ok, probably because I had cried so much the day before that my eyes were already so sore and dry, I already had a headache and generally felt exhausted. Maybe I was just too tired for my grief to take over? (Not a chance, of course the pain was there, ready and waiting). 3 uniformed paramedics greeted us with warmth and compassion, they offered us their sincere condolences as we were being shown into the meeting room. 1 of the 4 paramedics we met that night was here at the meeting, the one that I really wanted to see again. She was the one I spoke to the most that evening and the one who cuddled me at the hospital. We knew it would be asking a lot to see them all, I'm sure its triggering for them as well as for us. Plus, the nature of their job, they’ll be on various shift patterns.
We started at the beginning, and by that, I mean by sharing a few photos of William. It eases me into these harrowing conversations. It gives me a moment to compose myself so I can think about what I want to ask and also to give me some comfort, his beaming smile reminds me that I’m still his mummy.
We spoke about William being a healthy toddler with a slight temperature that day, the seizure starting and me making a 999 call. The operations manager explained to me where the call goes through to and how they’re assigned to the local team to respond to. The code C1 (category 1) was mentioned by him, and I remembered seeing it on the hospital notes we were given and then googling it. 999 calls are prioritised depending on the severity of the patient’s symptoms. The C1 category is for life threatening injuries and illnesses, a 21-month-old toddler having a seizure puts him at high risk. I felt myself rocking internally, nodding and accepting that the call I made was extremely serious considering the state of William’s health. We then spoke about febrile seizures and that they generally last a few minutes, and by the time the paramedics arrive at the scene, the child is already coming round and has stopped fitting.
However, when the first responders (the technician and emergency care support worker) arrived, 6-7 minutes into Will’s seizure, they would have acknowledged that this had been going on for longer than they would have hoped or expected a febrile seizure to last. They let the higher-ranking teams know on their radio that William was still fitting, and support was (already) on its way. A few minutes later the paramedic arrived and was ready to administer diazepam immediately, (first responders do not have the authority to do this). They had hoped that one dose of rectal diazepam would have terminated the seizure, but that wasn’t the case. William required a second dose of diazepam and that’s the maximum a paramedic can give, the next medicine on the treatment plan is an anti-seizure drug which is administered by the critical care team, and they had already been called.
After 45 minutes William’s seizure terminated, the team got him onto the stretcher and ready to leave for the hospital. I can’t remember what my little boy looked like on the stretcher, no matter how hard I try to remember him. In the meeting I asked if William was alert and responsive, they said he wasn’t. The team went on to explain that after a seizure terminates there is a period which is known as the postictal state, this can last between 5-30 minutes from the time the seizure subsides to a patient returning to the baseline. During this postictal state patients can feel confused, disorientated and drowsy, but William didn’t have any of these symptoms. He was on the bed, not moving.
During the 5 minutes between the seizure terminating and him requiring emergency help again, William was put onto the ambulance where the critical care worker was ensuring the anti-seizure medicine was ready to give to him if he did start fitting again. A side effect of diazepam is that it can slow or stop your breathing. William was hooked up to machines that were monitoring him, and they could see he had stopped breathing, however the paramedics told us they wouldn’t have expected a cardiac arrest to follow. Conversations like these remind me how unlucky William was, why did his seizure last so long? Why did his body go into cardiac arrest? Why, why, why?
CPR started immediately and I asked if a defibrillator was needed to shock his heart, it was explained to me that William’s cardiac rhythm wasn’t one that would have benefited from the machine. (I’m constantly learning during these meetings). A defibrillator is used when the heart is beating dangerously fast, William’s heart rate was slowing down.
Once William’s heart rate picked up and was stable, conversations were had about calling for an air ambulance to come and support the team. I found this extremely painful to learn, I consider air ambulances to be for the most serious, most critical cases. You see air ambulances on TV programmes when there’s drama and it’s a question of life and death, but actually this was where the team were at, the little boy they were trying to save was effectively trying to die; his body had been through so much and couldn’t cope with the stress that had been put on him from the seizure. They were considering how long it would take for them to get one to us, where to land the air ambulance, they said probably at the park and then the police would have brought the team to our house. It was a lot to take in and something I’d never considered until today.
We moved on to the hardest question I had, ‘when William went into his second cardiac arrest, was there a point when you would have stopped CPR?’ What a question to ask, what a question to receive. I felt guilty for asking it and putting the team in the position where they had to tell me. They confirmed that they NEVER considered giving up and stopping CPR, it wasn’t on their radar. He flat lined for 11 minutes, but they would have continued for hours, would have called the air ambulance for support, they’d have exhausted every option to get William to the hospital.
The paramedic, a parent herself told me how she was stroking his hair, telling him he wasn’t alone and to keep fighting. Hearing this broke my heart, she was doing all the things I would have done, she took on the parental role in the absence of Keith and me. She repeated to us again, ‘he wasn’t alone’. I nodded and thanked her, I've thought about what happened in the ambulance more than I've thought about anything else in the last year, and to hear William was mothered and comforted by her will always mean so much to me. He really wasn’t alone; the team spoke to him and willed him to pull through. She explained when you’re close to death or in a coma the last thing to go is your hearing, and so she made sure she was talking to him.
During the meeting I told the team that because of their incredible work that night, William didn’t die in an ambulance on the side of the road without his parents next to him. Their efforts meant that the hospital had a chance to scan him and try to figure out what they could do to make him better. Although William died, I always think about how grateful I am that I was there with him, so he wasn’t alone, but could drift away listening to my voice, and to have his mummy and daddy by his side.
I don’t say this lightly, it takes an incredibly strong person to agree to meet with bereaved parents and go through the details that I'm sure we'd both like to suppress. She was on the ambulance witnessing a little boy in cardiac arrest. The courage it will have taken for her to sit down with me and let me ask questions, I’m in awe. I know they’re within their rights to push back on meetings, but she didn’t and for that I am eternally grateful.
I remember once we arrived at the hospital that evening without any of our family there for support that she hugged me. We were two women desperately relieved that William had made it there alive, and on that evening of 13th November 2021 there was still hope for him. Keith and I were terrified for William but one thing for sure, the team of paramedics fought for a toddler who deserved so much more than 21 months.
This post is an open thank you to the SECAmb team, for all that you did for our little boy that day.
All my love,
#ambulance #999call #SECAmb #emergency #febrileseizure #postictal #CPR #resuscitation #cardiacarrest