This is Archie
Archie Alexander Miller was our first child, born on 18 October 2012. At our 20-week scan, we were advised that Archie’s heart hadn’t developed properly and he only had 3 chambers in his heart. He had a very underdeveloped right ventricle. We were told that this condition’s name was “Tricuspid Atresia” and was life limiting. We were advised that Archie could receive three open heart surgeries once born. One at only a few days following birth (BT Shunt), the second at around 3 months old (Glenn) and the third and final at around 3 years old (Fontan). These operations would not cure Archie’s poorly heart but would maintain him on his own heart for as long as possible. The length of time was unknown, but it was thought that the Fontan would keep Archie’s heart going until late teens, when he would then be assessed for heart transplantation.
Archie was born by planned c-section at The Princess Anne Maternity Hospital, in Southampton. He was pink, he cried loudly and…he looked great. Not like a sick, life limited baby at all. Due to how good he was and looked, he managed to skip the BT Shunt operation, and we were sent home with our bouncing bundle of joy, just a week following birth, after he’d spent some time on E1, Ocean Ward (Children’s Cardiac Ward), University Hospital Southampton.
We had very regular check-ups at Southampton, up until Archie was three months old, when it became apparent that he was struggling and in need of the Glenn open heart surgery. He didn’t exactly sail through this and there were some very concerning complications, but we got to take him home after a three month stay in hospital. He was doing great!
As he grew older, his Cardiac Consultant was always so surprised to see how well he looked at each check-up. Apart from him being small in stature for his age, you would never have guessed that our beautiful boy was fighting a huge battle inside. He was happy, always smiling and had a sense of humour and a half; he was also extremely clever and spoke as though he was an old soul in a little person’s body.
​
In September 2019, just before his seventh birthday, it was time to undergo the Fontan open heart surgery. He dealt with this in his usual brave and stoic manner and, even though complications had become usual for Archie, he was sent home six weeks later. Apart from a few minor difficulties, and admissions for cardiac catheter procedures, Archie was doing so well. He was in middle school and was managing full time education. We got to enjoy Archie being well and living his life to the fullest until 9th January 2024 – that’s when our world fell apart…
​
Archie was puffy in the face, tummy and legs, he was extremely unwell and vomiting pretty much continuously. We took him straight to our local children’s ward in Dorchester and they arranged for him to be blue lighted to Southampton. After a very frantic and terrifying day, we were told the devastating news that Archie’s Fontan was failing. Our beautiful, kind, caring and clever 11-year-old boy was in a really bad way. He had developed ‘Protein Losing Enteropathy’ (PLE) and the doctors were struggling to stop it. Next stop, assessment for heart transplant. We went to GOSH, London, in April 2024, and they started the process of transplant assessment. It wasn’t looking good as, along with many other things, Archie’s blood type was O- (O- hearts are very few and far between). At this point we’ve been in hospital in Southampton for 4 months. The PLE looks like it’s easing up one day, then the next he’s just as unwell as he ever was. We got home on leave for Archie’s little brother’s birthday at the end of April – Archie suffered a stroke at home and we were immediately blue lighted back to Southampton. From this point on, things went rapidly downhill, we were introduced to the Palliative Care Team and it looked like were losing our baby. GOSH had also come back and advised that Archie was too unwell to be a good candidate for heart transplant.
​
On Thursday 6th June, Archie suffered a further stroke but, this time, it was a “catastrophic stroke”, he became unaware of what was happening at this time, but it is thought that he had lost his sight and he had lost all mobility on the right side of his body. On that afternoon, we were told there was nothing more they could do, they’d transfer him out of PICU and back to his private room on E1 ward, which was the ward that had cared from him since he was born, they would keep him comfortable, but we had to get any family there straight away to say their final goodbyes. We immediately got Leo, his little brother, there along with his Grandparents and Aunt from his Dad’s side. Unfortunately, the Scottish side of the family couldn’t get there until Saturday 8th June, due to the speed at which this had all taken place.
Archie passed away with us (Mummy and Daddy) holding his hand and by his side, like we had been for the last six months, at 04:30 on Friday 7th June 2024.
​
Archie was a huge advocate for other children going through lengthy hospital stays and told the play staff what the ward needed for children like him, to keep their minds busy. After Archie’s funeral, we asked for donations to the Families of Ocean Ward Charity. At the end of 2024, we donated two brand new smart TVs, two brand new iPads and three brand new Xbox consoles to the ward, in honour of our amazing boy. We knew that’s what Archie would’ve wanted…but I can almost hear him say “that’s not enough…do more, Mum!”
So here we are – Archie’s Warriors!
​
Archie Alexander Miller - Forever Loved, Forever Missed,
FOREVER 11