Clare's Amazing Heart Journey

My mums midwife told her my heart beat was strong,then when I was born I was blue,a blue baby ,I was rushed to Myrtle street children’s heart hospital in Liverpool,I was one of the first patients there to have 2 open heart ops to save my life,transposition of the great arteries, when both arteries to the heart,blood ,oxygen was the wrong way around so they needed to correct it by doing a balloon septostomy just after I was born to allow blood to flow the correct way and the oxygen.
When I was one year old I was let out the the hospital to celebrate my 1st birthday,then the second day on the 20 th July I was rushed back in to have the mustard prodcedure by professor Pickford,
they had to crack my ribs to get to my heart, but this was the day in which they saved my life ,after coming out of the operating theatre they rushed me back in as I was haemorrhaging ,but they stopped the bleeding..growing up I used to get more colds & chest infections etc but couldn’t not do p.e in school ,or most of the time I wasn’t aloud to play outside in school especially in the cold weather,I was on meditation from day 1 when I was born and still on lots now ,I was at 8 years old Flintshire miss rosebud,and a model in Macclesfield,which I loved .. due to the cracked ribs I had a pigeon chest,
Growing up my pigeon chest disappeared and I had many other procedures,
I had my first pacemaker fitted 2007..due a heart block but my cardiac team couldn’t believe how well I was doing,even though I have so many heart problems which is complicated to write down ,then I had my second pacemaker fitted 2014
now I have a fitted new pacemaker/dibfibulater,i had this fitted ...2017
I still have many problems ,my right lung is not working well with my heart,yes I have lots of symptoms,chest pain,breathless,tiredness and when I’m ill I’m ill for a few weeks or even a month,I also have great days I love going for walks with my parents,I have difficulty in walking so I need to stop catch my breath and start again,I also love playing when I can with my niece and nephew.

I am now 44 and I’m here to tell my story to all those whose children are poorly with Tga or similar heart problems to offer hope..I love my life ,I am who I am because of my heart condition,if you seen me you wouldnt think that anything was wrong with me..every 3 months in Liverpool,I see a heart team also in Wales and just waiting for my next amazing journey in Newcastle freeman’s hospital...I wouldn’t change a thing about my heart failure ..my journey has been heard,scared but amazing at the same time ....let my second journey begin...watch this space ....for my special blog😇

photos are of me when I was a baby when I was allowed out of hospital for my fist birthday!
me in my ballet costume, yes I also loved ballet,and me today xx