Benji & Beyond Boxes

For those of you who don't know me, I'm Katherine, Benji's Mummy.

On the 20th December 2022 we lost our beautiful Benji, at just 18 months old. Benji never got the chance to fight, and he was taken far to quickly.

What is the most painful and hardest thing to ever go through, I have come up with an idea to help families who are going through the worst thing any parent could ever experience.

Here at Benji & Beyond we have decided we are going to change what it is we do, we have had such an incredible response from the boxes we created for the PICU unit, however we felt we weren't doing enough for the bereaved families.

So we have decided that going forward we are going to be creating two boxes, a pre-bereavement box and a bereavement box.

Pre-bereavement box - This box will be offered to families whose children are on end of life care, giving them the chance to create memories with their child before they die.

Bereavement box - This box will be offered to families whose children have died, and didn't have the chance to create memories before.

These boxes will be available throughout the hospital, mainly in the A&E/ER department, HDU & PICU.

Each box will be tailored to every individual family, and what their wishes are.

Once again, to make this happen we need the help & support of you. We have been so incredibly grateful for all of the support we have had over the last 2 years and you have helped us make a difference to many families!

I have also set up a Facebook page to keep everyone updated with the boxes, and so you can all see what a difference your donations are making.

https://www.facebook.com/profile.php?id=100090292986634

Benji's Story -

On the 15th December 2022, Benji woke up very poorly, with a raging temperature and a very fast heart rate. We managed to get an appointment at the GPs for that afternoon. So off we went to go get him checked out. The doctor was unable to find out what exactly was going on with Benji as he had no other symptoms of anything, just the temperature of 39 and a heart rate of nearly 200 BPM. So they sent us up to our local hospital to get him checked out.

We arrived at the hospital and were seen by triage, miraculously Benji's temperature had come back down to 37 and his heart rate had also gone back down to a normal level for his age. The doctors were happy for us to go home as there was nothing they could do as he no longer had any symptoms, we were happy with this decision, knowing to take him back up if he got worse again.

Friday and Saturday Benji still wasn't his self but his temperature was being kept at bay with calpol & ibuprofen and he hadn't gained any other symptoms of anything, so again we weren't overly concerned.

It was my birthday on the Saturday (17th) so we were out for a family meal, this is when Benji started going downhill, his temperature was creeping up and he was very grumpy, he also had what looked like strawberry tongue. So we made the decision that we would take him to our local walk in centre in the morning, trying to avoid the hospital at all costs.

Benji had a settled night, but woke up Sunday with a raging temperature and still not himself, so we took him to the walk in centre as planned. Again we arrived and we were seen by the triage nurse, who commented on his high temperature and fast heart rate again, we were seen by a doctor almost straight away, who again like the Thursday sent us to the hospital as he was concerned over Benji's temperature and heart rate.

We arrived at A&E, at this point I was alternating Calpol & Ibuprofen to try and keep Benjis temperature down as much as possible. We were seen by triage and they made note of all his obs, and again his temperature and heart rate being the only issue on paper. However I made a point of telling them how different Benji was acting, not interacting with anyone, refusing to walk around and constantly being slumped in my arms or his pushchair. Completely out of the ordinary for Benji.

We had a very long wait, and during this time a nurse came and took Benji's heart rate and temp again, his temperature had come down slightly thanks to the medicine I was giving him, but I made a point of this being why. However his heart rate was still far to high for a child of his age, and for any age. This allowed them to take us straight through to see a doctor. The doctor done his obs again, and he wasn't happy with how fast Benji's heart was beating. So he said we would need to stay until they got a more normal reading. In the meantime he had look in Benji's ears and throat, commenting on how both looked slightly red and sore.

At this point I brought up the idea of maybe Benji had Strep A, as we all know this was rife in December. The doctor however dismissed this straight away and refused to test Benji due to him having anti biotics two weeks prior, and said it was highly unlikely that was the cause of Benjis illness. And went with the diagnosis of Influenza A. I of course didn't argue this, as the doctor was trained, and I am not.

The doctor then waited for Benji to fall asleep before he took another heart rate reading, and this then came back lower and was happy for us to be discharged, and sent us on our way with the normal "warning signs" piece of paper. He told me Benji would be back to his normal self within a few days and to just carry on with the calpol and ibuprofen.

So that is exactly what we did, Monday was basically the same as the weekend, and we spent the day sat on the sofa watching Toy Story. At bedtime, Benji had his bottle and medicine, he was still very grumpy and unsettled, but nothing had changed so I didn't think anything was wrong as he hadn't changed from when the doctor saw him on the Sunday. Benji fell asleep like he always would and I placed him into his cot, just like every other night.

At 4.30am Benji woke up, so I bought him downstairs, changed his nappy and gave him a drink of water, which was unusual for him but he was poorly so I didn't think anything of it. He was still the same as he was before he went to bed, he was moaning no matter what I done, but would drift off to sleep, so I put him back in his cot.

Little did I know that would be the last time I saw my baby boy alive. I woke up panicking at 8.30am Tuesday morning, and instantly jumped out of bed and went into Benji's room, I just knew something wasnt right. As soon as I saw him I knew. I scooped him up in my arms, and ran into the bathroom telling my partner to phone an ambulance as Benji wasn't breathing.

I took him into our bedroom and the 999 operator talked me through giving Benji mouth to mouth, this wasn't working so I ran downstairs with him and led him on the lounge floor and performed CPR until the paramedics arrived. I won't go into details as it's something I don't want to ever relive.

The paramedics arrived and they took over, they performed CPR on Benji, gave him oxygen and tried everything to get his heart beating again, they never did.

They carried Benji out to the ambulance and tried the hardest all the way to the hospital while I sat in the front and David followed in his car.

We arrived at the hospital and taken straight into resus, they did everything they possibly could to try and bring Benji back but nothing worked. And hearing those words will haunt me forever.

At that point we were able to spend time with Benji, giving him cuddles, kisses and making memories that we will cherish forever. And walking out of that hospital without our baby boy is one of the hardest things we have ever had to do.

The next day we received a phone call from the hospital to tell us the results of the tests they performed on Benji to get the cause of death.

These came back as Rhinovirus and Invasive Group A Streptococcal Disease (Invasive Strep A) which lead to Sepsis.

As you can imagine our world came crashing down once again knowing exactly what took our baby boy away from us.

I'm unable to go into any further details, but in due course I will.

We are working on stopping this happening to another family, and making sure that every parent is listened to when they take children into the hospital to be treated. Because maybe, just maybe, if they took my concerns over Benji and his behaviour seriously then the outcome may of been different. But we will never know and will always have the what ifs.