My son Joshua is my hero and has overcome medical hurdles throughout his life. He makes me smile, makes me cry with laughter, makes me marvel at his encyclopaedic knowledge of the world around him.
He’s not only my hero for those things, he’s also my hero for everything he’s been through since he entered the world with his brother on Saturday 21st June 2014.
Joshua and Jacob
Joshua and his brother Jacob were born at 30+6 weeks. They had stopped growing and it was decided it would be safer to bring them into the world, than keep them ‘cooking’, so to speak.
Jacob was born at 09:55 and Joshua at 09:57. The difference in their arrival was quite stark. Jacob didn’t cry at all and sadly after 20 minutes of intervention, Jacob lost his life. A brief entry and exit but he is very much a part of our family and always will be. Joshua thankfully responded to treatment but he was extremely poorly. His skin wasn’t ‘normal’ and he was also born unable to swallow.
Complications at their birth
As a result of Joshua being unable to swallow and the presentation of his skin, the doctors thought he may have something called Epidermolysis Bullosa as being unable to swallow is often an associated complication. We live in Lancashire and the doctors were talking about sending Joshua to Birmingham where a specialist team is for Epidermolysis Bullosa.
Over the course of the day Joshua was intubated to keep him stable whilst the doctors figured out what to do. Joshua needed surgery so he couldn’t be kept in the hospital he was born at. Eventually we were told we were going to St Mary’s Hospital in Manchester. So at least we were somewhat close to home.
Manchester was to become our home for the next 5 months.
In those 5 months, Joshua baffled many medical professionals over the presentation of his skin. One consultant gave him a zero percent chance of survival. Of course hearing this was devastating for both my wife and I to hear. However something within us made us fight.
Due to the presentation of his skin, we couldn’t hold him for 3 weeks. He had to be smothered with liquid paraffin every 4 hours. My wife Rebecca helped with that, but I couldn’t face doing it, I’m too heavy handed and I didn’t want to hurt him, with being so tiny. When the time came to hold him, that was single handedly the best feeling ever.
He had his first operation around this time to fit a PEG so he could receive our ever growing collection of expressed breast milk. He was also fitted with a Broviak line which was to be used for medication. This gave Joshua a chance to gain weight and become stronger for the bigger operation. The doctors still weren’t convinced that Joshua would come through this because his skin was so fragile.
Joshua had other ideas.
The doctors now agreed it wasn’t Epidermolysis Bullosa, but remained equally baffled. Joshua’s skin was getting better but it was obvious it wasn’t ever going to be normal. He was getting stronger through the power of breast milk and sheer determination. Rebecca managed to express breast milk for around ten weeks. I am so incredibly proud of her for this, considering breast feeding wasn’t on our agenda, she did a great job!
As time went on Joshua gained enough weight for his big operation. The doctors and surgical team were convinced it was a matter of connecting his oesophagus to his stomach and then he would be able to swallow. At this point Joshua had nothing through his mouth, so this was pretty monumental. Around this time a dermatologist officially diagnosed Joshua with Congenital Erosive Vesicular Dermatosis. To date, as far as we know there are 30+ cases worldwide. No wonder the doctors were baffled.
Time for the big operation and Joshua to be ‘fixed’… Or was it?
Joshua went down to the theatre and we were told to expect him to be back on the ward in around 4 hours. Rebecca and I took ourselves off to get some breakfast and back to the room we had been kindly allowed to stay in at Ronald McDonald House. We were watching Only Fools and Horses on DVD for a bit of ‘light entertainment’. After approximately an hour or so, we got a call from the surgeon asking us to meet him over at the ward as he had to abandon the operation.
It turned out that Joshua actually had a fully formed oesophagus! However he had a blockage or web that was stopping him from being able to swallow. Joshua further confused the doctors and now surgeons!
By now having the novelty of Joshua causing this confusion and bewilderment was beginning to wear off. We were tired, we were stressed and just wanted to take our boy home.
The surgeon had to come with a plan to remove this blockage safely. Normally this would be a relatively straightforward procedure but due to Joshua’s skin, this was the stumbling block in the surgeon’s way. He consulted with Great Ormond Street hospital who told him in no uncertain terms that they were glad it was his problem, not theirs.
Not deterred, his surgeon came up with a plan. We were hopeful that this would mean that Joshua was on the home straight. The date was set for his operation. We were set and we had complete faith in his surgeon.
The date came…
But the operation had to be cancelled. This was due to an emergency the night before. There had been a house fire and most of the team that Joshua’s surgeon wanted with him, had to operate on a victim of the fire over night and subsequently wouldn’t be available to assist with Joshua’s operation. Both Rebecca and I were extremely gutted but we understood. We were assured that Joshua was top of the list, barring any emergency.
A new date was set. We were all ready for round two. Joshua was stronger and you could see his little personality growing. So off he went again with another date with his surgeon…
We went off as we did for the first operation, not knowing what to expect. We got a call a short while later from a nurse…. She said he had a TAT tube fitted. That gave us a clear indication that the operation was a success, but given Joshua’s complexities, this was far from certain.
His surgeon called us into a room and told us in no uncertain terms “I’ve done it”.
Joshua spent a few more weeks at the hospital for monitoring and we were eventually discharged on 21st November. We entered the hospital in Summer when it was nice and hot, we left as they were preparing for Christmas.
Joshua is 7 this month and since being home he’s gone from strength to strength. He eats very well. His skin is mostly scar tissue and he can’t readily regulate his skin temperature. He’s under investigation for Autism and possible ADHD and sensory processing issues. He’s also been diagnosed with Portal Vein Thrombosis which is continually being monitored by a doctor locally and by doctors in Leeds.
His unbridled strength and tenacity has given me so much food for thought. He’s taught me how to be strong, even when I don’t feel like it. I struggled bonding with him at first but I’m working hard on that through writing and talking about his and my experience of being his Dad.
I am unbelievably proud of him and although he doesn’t realise it, he’s my favourite superhero. He is literally “one of a kind” as he is the only reported case for the conditions he was diagnosed with in combination with each other.
A true miracle in the medical world as well as ours.
Hello there! James, Joshua‘s Daddy, James here . I’m 34 and from the mighty county of Lancashire. Along with Joshua, I live with my beautiful wife Rebecca and our pet cat Sooty. I have a younger brother Christopher and am Uncle to two wonderful nieces, Charlotte and Lily-May. I can’t forget my wonderful Mum on this! Sadly, my Mum has Alzheimer’s, but we make the best of what comes our way. My Dad and I are not in contact for various reasons and to be completely honest, I think I would rather it be like this. You can read more about that here. It’s tough, but my main priority is my own family, Rebecca and Joshua, then our wider family.
Growing up, I never in a million years expected to get married and have children, so I feel very lucky to have both these things in my life. I work full time as a Civil Servant, I enjoy my role as it’s something different every day and it’s extremely challenging, especially in this day and age.
You can read more blogs written by James at https://myherojoshua.co.uk/
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