On Saturday 21st June 2014 at 9.57 am, aptly the longest day of the year, Joshua was born to Rebecca and I. Joshua was 3lb 2oz when he was born, so he was very tiny. His twin brother Jacob was even smaller and tragically he passed away around 20 minutes after birth.
Joshua was born with a very rare skin condition that at the time was undiagnosed and he was also born unable to swallow, which the consultant neonatologist at the hospital said was something called TOF. TOF stands for tracheo-oesophageal fistula.
In essence, it means the trachea has the oesophagus connected part way up. The “normal” presentation of these two organs is that they are separate. The trachea is connected to your lungs for breathing and the oesophagus for swallowing. It is estimated that 1 in 3,500 babies are born with this condition. Though Joshua didn’t have a ”classic case” of this, though we didn’t know that until around a few months later. I wrote about this in more detail here.
As the doctor explained we had to be transferred to St. Mary’s Hospital in Manchester. Rebecca staunchly declined to go at first but it was explained because Joshua needed surgery, he must be sent there. We were sent down in an ambulance and Joshua went down on his own in the specialist ambulance set up for newborns that needed transferring. We didn’t know what to expect or what was going on, it was all such a blur.
I’m not going to go into the intricate details of Joshua’s stay at the hospital into too much detail. I am planning on writing about this experience in great detail, whenever I get the opportunity to start! However, we spent 154 days there. We were extremely lucky to be given a place to stay at the Ronald McDonald House, where parents can stay for as long as their child is in hospital. I’m not exaggerating when I say it was an absolute god-send to Rebecca and me.
Joshua’s skin condition is called Erosive Vesicular Dermatosis. Now, I don’t expect anyone reading this to know what this condition is and means, this is because there are only 32 reported cases of it worldwide! With Joshua’s other condition, this makes him the ONLY reported case in the WORLD. Thankfully both conditions are both well-controlled and Joshua is going from strength to strength. Despite those conditions being under control, Joshua also has a diagnosis of Portal Cavernoma In addition to this, he is also under investigation for Autism.
I started this blog to show the ‘world’ how proud I am of him. He truly is my hero, hence the blog name ‘My Hero Joshua’. I hope you enjoy reading the blog and posts, I am aiming to add a little humour to the posts, mainly what Joshua has come up with throughout the day.