Anyone who has personally experienced anaphylaxis or witnessed a loved one go into anaphylaxis will know it’s a harrowing experience that never leaves you. Unfortunately, it’s becoming more and more common.
Safer Victoria reports that the number of people going to hospital with anaphylaxis grew by a staggering 75 per cent over four years. And data collected by the Department of Health and Human Services shows an average of 50 anaphylactic cases per week in Victoria with more than 60 per cent being food related.
I will always remember the 17th of April 2015 as the day my precious firstborn child nearly died. It was the first time Charlie experienced anaphylaxis and he was just shy of three years old. It’s an incredibly painful memory and one I’d prefer not to revisit. At the same time, it taught me a lot about how to deal with a severe allergic reaction. If sharing my experience helps just one person living with food allergies, I feel a responsibility to write about it.
Lesson 1: Change is inevitable, but it can throw the best laid plans into disarray.
The day started like any other. It was Friday so Charlie attended the daycare he’d been at since he was 10 months old while I spent the day tending to Arnold who was nearly eight months old. We’d decided to keep Charlie enrolled in daycare while I was on maternity leave so he didn’t lose his place if I decided to return to work. The daycare centre was egg and nut free which minimised Charlie’s risk significantly.
The centre was typically excellent at managing Charlie’s allergies. The cook created delicious safe meals for him, the staff sent me photos of his meals and I was called whenever Charlie had a contact reaction from dairy. This was fairly frequent as most of the children drank cow’s milk with drops getting spilt on the floor or kids’ hands. The staff and I worked together to minimise Charlie’s exposure and additional plans were put in place as risks were identified.
About a year before the incident, the daycare centre had been sold to an ASX listed company that ran daycare centres across Australia. They had introduced a lot of changes and often failed to communicate these with staff and parents. As a result, the staff turnover increased which put pressure on the remaining employees. This impacted the effective processes we had put in place to keep Charlie safe.
Lesson 2: When it comes to food allergies, always trust your gut.
On that fateful Friday, Arnold and I picked Charlie up from his daycare room at about 5pm. The children were eating their afternoon snack and the staff were looking forward to heading home after a long and stressful week. I remember it felt a bit crazy in the room – the children were tired and the staff were frazzled.
I noticed that Charlie was eating a mini croissant and I was immediately rattled. I went to ask the staff if the croissant was safe and then hesitated. I told myself I was probably overreacting and being a typical untrusting, anxious and annoying allergy parent. Charlie had eaten sausage rolls made with a vegan pastry at the centre numerous times before and the croissant was probably made with the same pastry. Charlie seemed happy eating it and he was good at sensing when something contained his allergens.
Lesson 3: Anaphylaxis can occur without visible physical symptoms like hives or swelling.
On the walk home, Charlie started to complain of a sore tummy. We got home and I put Arnold down for a nap while Charlie rested on the couch. Charlie continued to complain of a sore tummy and about half an hour later started to have a persistent cough. I started to worry and called the daycare centre to ask the staff to check the ingredients of the croissant. The cook was no longer onsite and they said they would find out and give me a call back straight away.
I gave Charlie some Zyrtec and got out his Anaphylaxis Action Plan to check his symptoms. Charlie had one symptom listed under the mild to moderate section and one symptom under anaphylaxis. The daycare centre called back and confirmed the croissant did in fact contain dairy. I called 000, explained the situation and they stepped me through how to give Charlie the EpiPen which we thankfully had at home.
Lesson 4: Always have enough medication on hand wherever you go.
Charlie was brilliant and followed my instructions perfectly. He laid still on the couch while the needle from the EpiPen went into his thigh and I held it there for 10 seconds. The EpiPen started working immediately and his coughing stopped. An ambulance arrived a few minutes later to take Charlie to hospital for further observation. Fortunately, the paramedics let me strap Arnold into a baby carrier so we could stay in the ambulance with Charlie.
By the time we arrived at the Royal Children’s Hospital, Charlie was feeling much better with no further medication required. We were advised we’d need to remain in hospital for a further four hours in case of a biphasic reaction, which is the recurrence of anaphylaxis after the initial anaphylaxis.
Lesson 5: Allergy-friendly food is hard to find in hospitals.
While we waited, Charlie started to feel hungry. In the rush to get him to hospital, I hadn’t brought any safe food for him to eat and the only option the nurses could find was a small carton of soy milk.
When Charlie’s dad arrived at hospital, he checked out the options at the food court. French fries or chicken salad seemed to be the only safe options for Charlie, however he’d never eaten either of these before. I thought it would be great if someone provided the hospital with a vending machine loaded with snacks that catered to the needs of people with food allergies. A seed was sown but I wasn’t yet aware that I would one day set up a business to make that happen.
Lesson 6: Allergy policies and procedures only work if everyone follows them.
The following Monday, the new director of the daycare centre contacted me to discuss what had happened. She was extremely apologetic and concerned and said she’d already reported the incident to the Department of Education, who'd be in touch to get a verbal and written report of the incident. The Department would then investigate the incident and interview the staff involved. It was an exhausting process, but it was necessary for Charlie’s safety and the safety of other allergy children who might attend the centre.
The investigation discovered a series of events, changes and miscommunication that took place on the day. The cook had resigned and finished up at the centre two weeks prior which wasn’t communicated to parents. Another qualified staff member was filling in but that Friday was their last day, so they left early.
The standard procedure was to prepare a safe alternative for Charlie’s afternoon tea and leave it on the counter with a note. Instead, Charlie’s afternoon tea was left in the fridge before the cook left for the day. When the staff entered the kitchen to get the afternoon tea, they didn’t see an alternative snack for Charlie so they assumed the croissants were safe for him to eat.
I felt awful for the staff member who had collected the afternoon tea. Despite following the procedure, I had to fight for her to keep her job because she was used as a scapegoat. It was clear to me that the blame fell on the stand-in cook who didn’t follow the procedure, and the corporate office who were focused on the bottom line at the expense of the staff and kids. While I received a heartfelt apology from the centre director and staff, I never heard a word from the ‘suits’ in head office.
Lesson 7: Despite your best efforts, mistakes will happen so be prepared.
People with food allergies will actively try to avoid their allergens every single day. Nobody ever plans to have an allergic reaction. The hardest part of living with food allergies is that you can’t avoid food and live in a bubble. At some stage you will have to rely on someone else to prepare food for you. Simple, honest mistakes do happen and unfortunately they can be deadly for someone living with life-threatening food allergies.
The most important this you can do is be prepared by carrying an EpiPen (or two) everywhere you go. ‘No EpiPen = No Food’ is the motto in our house. No one is allowed to eat until the EpiPen is located which puts all our minds at ease.
Lesson 8: Life is precious. Don’t take a minute for granted.
It goes without saying that Charlie’s first episode of anaphylaxis shook me to my core. It was the day I realised how fragile life is. And the day I decided to never take a minute for granted.
Ever since Charlie was diagnosed with multiple life-threatening food allergies as a baby, it has felt like death has been sitting on our doorstep. Waiting for a mistake to be made. Waiting for an opportunity to pounce. On this particular day, death got its foot inside our front door. But I slammed the door in his face and told him he’s not welcome in our home ever again.
Keeping your child safe in a world filled with food allergy dangers is a tough and exhausting job. If your child has life-threatening food allergies, I hope that sharing my experience makes you feel a little more prepared and a lot less alone.
Have you experienced anaphylaxis? What did you learn from the experience? I’d love you to share your insights in the comments.