This is Joseph he’s almost 16 months old he was born with complex cardiac conditions.
He was diagnosed with Transposition of the great arteries, Hypoplastic Aortic Arch, multiple VSD’S, an ASD and his coronary arteries has formed incorrectly. He underwent his first repair and had a very rough recovery resulting in Ecmo, multi organ failure, extensive blood clots, bleed on the brain, many more surgeries and endocarditis. But Joseph being a strong little warrior he fought through and at 4 months old he came home a day we never thought would ever happen.
He has since had a few admissions into hospital but he is currently doing very well thanks to the help of Alder Hey Children’s Hospital and his local teams. If you didn’t know Joseph or his story then you wouldn’t even know he has complex congenital heart defects, You’d see what looks like a healthy little boy. But underneath his clothes show his battle scars that shows how hard he had to fight just to get to where he is now.
I’ve noticed more recently then ever people looking at us funny for parking the car in a disabled bay or the funny looks we get when we get his gastrostomy tube out to feed him in public or when we set up the pump. This is minority of people and they are more than likely curious but you get some that can be really rude and their comments are hurtful. He’s been called a poor kid, told by a stranger he will never have a normal life and even to keep my medically ill child at home… we were on a bus going to a hospital appointment at that time. Well we have blue badge for a reason and we have learnt not to let people’s comments bother us when we get his tube out to feed him.
CHD is an chronic illness it will never go away or be cured and I’m so glad Joey is too little to understand at this moment in time why people look at him and sometimes make comments like they do. But one thing I will say every single day is I’m so proud of our little boy he’s amazing. Just remember to be kind because you don’t know what a family have been through.
To our beautiful little warrior we are proud of you every single day, you are such a happy little boy no matter what you go through you always smile. You amaze us with your strength and determination, its amazing to watch your milestones we love you to the moon and back.