In August 2020 I was diagnosed with a heart condition called Wolff Parkinsons White Syndrome. It was something I had never heard of but reading up on it, I found out it was a condition you were born with that showed itself within your 30s. After my ablation surgery I was told it was successful and I would be fine.
Four years later in November 2024, my 13 year old son came into my room at 7:30am upset, saying he hadn’t slept and his heart had been racing all night. I thought he just wanted the day off school, but when I looked at him he was clammy and pale. I checked his vitals at home, as I am a nurse. His radial pulse was normal, however listening into his heart it was racing. We went to A&E and the monitor showed his vitals to be normal too. I pressed for an ECG which led to a crash call being put out and spending 9 hours in resus with countless doctors trying to stablise my son before transferring him to The Royal Brompton who specialise in heart and lungs for children. I, being medical was watching the monitors, seeing the drug prep and assumed my son was going to have a cardiac arrest there and then, but thankfully they stablised him.
At Brompton upon arrival, we went straight to the PICU for a cardioversion, this successfully put his heart back into a normal rhythm. He then had surgery planned for the following morning as he too was then diagnosed with WPW and we were told how rare we were, as we had both presented in the same way. The ablation surgery was unsuccessful and after a weeks stay in hospital, we were discharged home with medication and a second surgery scheduled in February 2025.
This was to be a day surgery and he was to stop taking his medication 5 days prior to see the elevated levels at the time of surgery. His first surgery lasted over 5 hours, this one less than 2. They claimed it was successful, monitored him for a few hours where again I was watching the monitors and was concerned about the rise in his heart rate. I was told everything was fine and the operation was a success. We were sent home with no medication and a follow up on the 30th June.
Between February and June my son showed signs of what we thought at the time was panic attacks. He saw school nurses, paramedics, pediatricians and A&E nurses to which no one, including myself, escalated his symptoms further. On June 13th 2025, I got up like I did any other day. My son didn’t want to go to school as usual said he didn’t feel well when he was fine. He went in late, only by two hours, and had what seemed a normal day. He finished school and met up with his older sister. They came home together while I was at work and I spoke to him before he went to sleep around 11:30pm. I came home for work shortly after and he was sleeping in his bed. I couldn’t sleep by 4am I tried when I heard this gargle sound that echoed through the house. I got up to investigate only to find it was coming from him. I found him hanging off his bed. Being medical I didn’t know what agonal breathing sounds like, now I do. I work with newborns and the start of life I had no idea what end of life looked or sounded like. I assumed sleep apnoea and tried to wake him so he could take a good deep breath. I wasted precious minutes with the light off trying to wake my son. When I turned the light on I noticed his lips were blue and I couldn’t feel or hear a pulse.
I called for an ambulance dragged him off the bed and started administering CPR, I talked my friend through compressions and then my 17yr old daughter, before completing another round myself. The paramedics arrived and attached a defibrillator. He was in v-fib they shocked him and continued compressions. His room was too small and we moved him to mine were they intubated and inserted an IO drill, gave medication and scanned his heart, no activity. LAS was also there, my understanding is if they did get a rhythm back he would have been air lifted to the nearest hospital. It was the lead air ambulance paramedic who first told me she doesn’t think he will come back from this. My legs caved, I had realised in that moment I had been hopeful he’d recover. They didn’t want to pronounce him at my home so in order to stabilise him they strapped a device to his chest that did the compressions for them. However ,each time they stopped the flatline was loud and clear.
They put me in the front of the ambulance and continued to work on him in the back, we went to our nearest hospital and he was back in the same resuscitation bay he was in back in November. The nurse that was with him in November was also with us on this day. I knew they needed to handover to the medical team and I was told to wait in a room but I knew my child was dying and I couldn’t breathe – I just needed to be with him. They finally let me in and after 2 hours of working on him they let me hold his hand and say goodbye before they discontinued compressions. I stayed with him for over 12hrs that day, I washed him up and tried to care for my baby. I don’t know how I managed to leave the hospital. I kept apologising to my daughter, she is the only reason I have summoned some strength to carry on. I had to talk to nurses, doctors, police and air ambulance, I was on auto pilot. My memory has always been one for every detail and I must have relayed the night over a 100 times within those 12hrs. I asked if it had anything to do with the WPW and was told if the operation was successful then no. I found out 10 weeks later from the post mortem it was the WPW and also the assumed panic attacks were his body was telling us this could happen and I had no indication that SCA was a risk factor I should have been looking out for.
I feel robbed, my son was the most loving soul he’d light up every room he entered and he left an impression on everyone he met. He died 3 weeks short of his 14th birthday, he will forever be 13. 5,094 days that’s all I had with my son not nearly enough now I have to spend a lifetime waiting to see him again.
