· By Tiny Hearts Education
In loving memory of Archie
Archie's Strep A story.
We arrived at the emergency department at 9.30 am on Sunday. At the triage desk, I told them Archie had been intermittently fevering for the last 48 hours, fluid intake and urine output had gradually reduced over that time, and he had a fine red rash that had just started to appear over his back and abdomen. After a long wait in the emergency waiting area (checked on a couple of times), we were admitted to a bed at around 3 pm.
The focus for the doctors was getting Archie to urinate, so we kept going with hydralyte and were hopeful that it would come soon. At this point, he started to deteriorate and become more and more lethargic. I was told I could take him back home and wait for him to urinate or stay in ED, but I, of course, opted to stay. I explained to the doctor that Archie had never acted like this before when sick. He'd had covid at 4 months old and had every bug from daycare, and I had never ever seen him like this, yet the focus was still on his urine output. His urine output was the sole focus for the first 10 hours of our time in the emergency department.
By 8.30 pm, there was still no urine. It was at this point they decided to insert a catheter and cannula to get urine output & take bloods. Through all of that, Archie didn't move a muscle. Concerns were flagged to the Paediatric registrar at 8.30 pm for an emergency review as he was continuing to go downhill, he was completely floppy, and the rash was getting worse. The Paediatric registrar reviewed him around 2 hours later. After the review, his case was referred to the Paediatric Intensive Care Unit (PICU).
Around midnight on Sunday, we were informed Archie needed to be moved to PICU for care. This did not occur for another 2 hours. At 5.30 am, we were asked to leave the room and go for a rest in another room. Archie had started to become agitated, and a heavy bluish rash started to appear. They wanted to intubate and sedate him to allow his body to rest and for them to treat him. We were told the process would take around an hour and it would be a good opportunity to get some rest.
30 mins later, we were woken by a doctor and head nurse for the shift. They wouldn't tell us straight away what was happening. But I knew something was wrong. I remember yelling, "Is he alive?" Archie had gone into cardiac arrest. Running down the corridor to his room, I don't think anyone could have prepared us for what we were about to see, what felt like 20 doctors and nurses around our poor little boy, trying to bring him back to life. I remember the nurse holding my body up, and I yelled to Archie, telling him that I was here.
After 20 minutes, they got him back. They still could not get any fluids from him, his organs were failing, and they started dialysis. This was too much for his heart, and he went into cardiac arrest another two times. I remember sitting on the bed next to him when he went into cardiac arrest the 3rd time and seeing blood drip from his eyes as they tried to bring him back. Something that I still see vividly in my mind. By this time, our little boy was almost unrecognisable. He was so swollen and blue.
It wasn't until sometime Monday that we were told that Archie had two viruses described as the common cold and a bacterial infection known as Group A Streptococcus, which had turned into sepsis. His blood pressure and heart rate remained low as he was not responding to all the drugs being pumped into him. This meant that his body went into preservation mode, with the non-essentials (hands, arms, feet and legs) turning blue and purple with the lack of blood. More and more not looking anything like our precious little boy. On top of this, doctors informed us that it was more than likely he had severe brain damage and would not be able to lead a normal life if he was to get through this. And there was also the threat of him needing limbs to be amputated. Doctors explained several times throughout the day that they were not sure he was going to survive and that if he were to go into a cardiac arrest that lasted more than 10 minutes, it would be in the best interest of Archie to let him go.
This forced my husband and me to have the worst conversation of our lives. One that no parent should ever have to have. We had to discuss that we may have to make the decision to turn off the machines and let him go. As horrible as that was for both of us, we agreed it was in the best interest of our little boy. We requested the doctors to please just help us get him to his first birthday, which was the very next day. At midnight, as it changed to the 23rd of August, balloons filled the room as we sang happy birthday for the first and only time to Archie, surrounded by our closest family. My husband and I then cuddled up in Archie's room to sleep together, one last time.
The next morning, we had the gut-wrenching conversation with Archie's doctor that we were ready to let him go. Once preparations were made, I held my little Archie boy whilst machines were turned off, and he took his last few breaths.
Almost five months after his passing, we were handed a report which detailed the hospital's findings after a 3rd party review of his time in their care. The idea of this review is to find areas where the hospital can improve. Whilst it did that, it also informed us that the care Archie received was well below what you would expect. The review found:
- Details were not passed from triage in ED to the doctors and nurses when he was allocated a bed.
- Charts that were used to plot Archie's vitals were for 3-12 months, Archie was two days from turning 1 when we were in the hospital, and his vitals showed he was in the acceptable range. When reviewed against the 1-4 years chart, it showed he was outside of tolerances and very sick.
- There were some early signs that he could have had sepsis but a pathway to confirm or treat this was not activated until too late.
- Nurses & doctors are not allocated beds to care for patients. They just circulate constantly, meaning Archie didn't have the same person looking at him during a shift. Handovers were also not conducted to an acceptable level.
- Normal practice for no urine output is to try for 4 hours with forcing fluids. This was tried for almost 12.
- An emergency review should occur within 30 mins once flagged. For Archie, this took around 2 hours.
Whilst we know that we did everything we could have for Archie, we obviously wish there was something that we could have done to save him. But unfortunately, Archie did not receive the appropriate care. The hospital told us they can't say that if his care didn't have the mistakes that he would have definitely survived. In our hearts, we can't help but think if he could have just got the care he deserved, he'd be here with us filling our lives with smiles and laughter.
For all parents out there, please fight for the right care for your kids. Our kids are the most precious gift of all. No one knows our kids better than we do, and they are worth fighting for.
Note from Nikki:
My heart goes out to this beautiful family. I’m so grateful and in awe of their strength to want to share their story purely to help other families avoid the same devastating reality they now face without little Archie.
Archie’s story has resulted in many important changes being made to the hospital system to ensure this doesnt happen again.
To learn more about Strep A and what to look for please read this blog.
In loving memory of Archie, fly high beautiful boy.