How do you move on after doing CPR on your baby?

I'm stepping away to be with my children right now.

🚨 WARNING: This post contains traumatic events about how I almost lost my youngest child. Please skip this post if too upsetting for you.

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The last time I wrote to you, I mentioned how everything finally felt aligned. But everything went wrong only a few days later.

Many of you will know that my youngest has complex health issues that we can’t get a simple diagnosis for. It’s been a case of lots of tests and scans, and endless appointments with health professionals. It’s been A LOT in the 2.5 years he’s been alive.

So, when I wrote in September how he’d been discharged from physio and things were looking good for the first time in a while, little did I know how close we were to losing him.

Tuesday 30th September. We met with our lovely Speech and Language therapist at our home. William made lots of sounds and even said some words. My husband and I were so pleased and proud of him, it was beautiful to hear his little voice.

We went out for lunch and went for a walk late afternoon. It was a normal day. We bathed William and put him to bed. He started a new medication that week to help with his sleep, so bedtimes were getting easier.

This is the part we’d been looking forward to all day - sitting on the sofa with some snacks and watching our latest box set on TV. The baby monitor was on, the snacks were delicious, and everything felt perfect.

Then, around 30 minutes later, William made a sound and I could see him stirring on the baby monitor. I went straight upstairs to settle him back down before he woke fully, except when I got to his cot he was having a seizure.

Now, my husband and I aren’t strangers to William’s seizures. He has them at least monthly, and we have been trained in paediatric first aid to make sure he’s safe. We were calm as we began recording him and timing how long the seizure would last.

William has rescue meds that we need to give if the seizure lasts longer than 5 minutes, but the last time we gave him it (the month before), his breathing slowed. We were waiting for a new rescue medication to try out, and were advised not to use his current one in the meantime.

The new rescue medication hadn’t been sorted before his next seizure (this seizure), so as instructed by his paediatrician, we didn’t give the rescue meds but instead called an ambulance at the 5-minute mark.

We were assured an ambulance was on its way and were told to call back if things changed. Things did change.

When William was still having his seizure at 12 minutes in, we were getting desperate. My husband called the ambulance back, and after weighing up the pros and cons, we made the decision to give him his current rescue medication. We knew it would affect his breathing, but the ambulance was on its way so we felt it was a risk we should take.

We gave the medication.

5 minutes later, he was still having a seizure. At this point we were almost 25 minutes in and still no ambulance. William tends to make a lot of noises when he’s having a seizure so a few minutes later when the noises stopped I thought he’d finally come out of it.

My background is in nursing. I’ve cared for critically ill people before, and I know the signs to look out for. I suppose that knowledge never really leaves you because even though I know noisy breathing isn’t good, no noise at all is worse.

I looked at William and knew. He’d stopped breathing.

At this point, I switched off any emotion and knew that if I didn’t do something, I would lose him. My phone was still recording, but my husband had put his phone on loudspeaker so I could talk to the 999 call handler and explain what was happening.

I scooped him out of his cot and placed his lifeless little body on the floor of my bedroom. One hand pinching his nose, the other tilting his head up, I covered his mouth with mine and gave 5 rescue breaths. One hand in the centre of his chest, 30 compressions. Then another 2 rescue breaths, then another 30 compressions.

As a nurse, I’ve done CPR training and performed CPR on my adult patients multiple times. I knew what to do. To an adult. It was literally my job to do CPR if a patient stopped breathing, but as scary as it was in a hospital setting, it was still a stranger, and I had a team of people and equipment to help me give that patient the best fighting chance of survival.

I know that the chances of survival for an out-of-hospital arrest were low. At some point during the compressions on William, this fact hit me. I was doing out-of-hospital CPR on a baby. My baby.

I did it for 6 minutes until an ambulance crew arrived. Those 6 minutes felt like 6 hours.

They told me not to stop while they set up the equipment, and when they were ready, I stopped for a pulse check.

He had a pulse and I stopped the compressions while they took over his airway. I finally let out the emotions I’d been keeping in while I did what I had to do to give my baby the best chance of survival.

A second crew arrived, and we decided to scoop him up and get him to the hospital as quickly as we could. We’d done everything we could at this point, and now he needed to be seen by doctors at the hospital ASAP.

That night was the worst night of my life.

We’d nearly lost our baby. Our older two children were in the house as all of this was happening. They nearly lost their brother.

People kept saying how well I’d done and that I’d saved him, but I couldn’t really understand that I’d done CPR on him. I couldn’t believe it was real. Things like this didn’t happen to people like me, I only heard about stories like this on tv.

Only now that we’re a few weeks past this, I feel like I can write about it. Writing it all out like I have done here is what I needed to understand what I’d actually been through. I caught it all on my phone when I was recording, but I can’t watch it back, so writing this has helped me process it.

I can see now why I daren’t leave William on his own. Why I don’t sleep and why I check on him constantly through the night. Why I get hit with anxiety out of the blue and I can’t breathe. He’s absolutely fine now and back to nursery. I’m so grateful that he’s too young to remember this horrific event in his life. His nursery staff are incredible too, and have had all the training they need to care for him when he’s with them. I don’t know what I’d do without them.

His nursery is a 5-7 minute drive from my home, and I know I can get there immediately if nursery phone me and he’s unwell. If I have to go anywhere else while he’s at nursery (like to the supermarket) that’s more than 5 minutes away from him, I can’t concentrate. I feel so scared all the time that I need to be near him, or within a 5 minute drive.

Working hasn’t been an option for me this month. There’s too much going on and every time I sit at my computer my mind just goes blank and all I think about is William. I don’t want to do anything. I don’t want to read. I don’t want to scroll on my phone or watch tv or do anything really.

Nursery is closed next week and my older children are off school for half term. I can’t wait to spend some time with them and soak up William as much as I can. I just need to be with him right now, and everything else can wait. I don’t really know how to move forward after such a traumatic event

So I don’t know when I’ll be back to writing consistently. I know I do want to come back but my focus and attention is on William right now and learning and coming to terms with our new way of life, a new medical diagnosis, new medication that we need to titrate the dose for so we can reduce the seizures, new training and new care plans.

I’ll be back at some point.

Speak soon,

Sophie