Zoe living with TGA after the Senning procedure

Zoe Dickson growing with Transposition of the Great Arteries (TGA)

Zoe, who is currently 21, wrote her story from her parents finding out she had TGA to where she is now. Zoe is looking to interact with other survivors of TGA'ers.

I was born in the early part of 1987 and I was rushed to Southampton General Hosptail at just 6 hours old because I had turned blue and that my sats (oxygen levels) kept dropping. My Cardic specialist later told my parents that he thought that would be the last time he would see me. He now calls me his miracle baby.

My parents weren't allowed to visit their ill daughter for 3 days.

I remained in Southampton for 7 weeks and during this time I had lots of tests done including a Cardiac catheterisation to buy time. When I was allowed home I had to be fed 6 times a day in order for me to weigh the right amount for my operation.

I returned to Southampton when I was 9 months old and I was orgianally going to have the switch operation but my deut got infected so my team spoke to my parents about me having a different operation known as Senning operation, which they agreed to.

Zoe at 6 days old.

The operation itself took 5 hours.

The doctors told my parents that it had been touch and go a few times but they were very pleased with how it went.

The day I was meant to go home was Christmas Eve 1987, but just before I was about to leave the hospital and go home they needed to do my obs done which showed that my pulse was a shocking 300, and I eventually arrived home in 1988.

I have had life long check-ups like everyone has TGA and I will still continue to have check-ups for the rest of my life.

Growing up was really hard at times with not being able to talk to anyone else with TGA because I did not know anyone else with TGA. My parents were good but sometimes they did not understand how I felt.

At school the other kids made me not want to go to school. I remember some mornings saying to my mum that I wasn't very well just so I didn't have to go in. I was very wary of going swimming as some of the other children picked on me because of my scar but I now realise that without my scar I would not be here now.

I never told my mum about being bullied about my scar as I thought it would upset her as she always told me that she would let me lead a normal lifestyle.

When I finally got to year 7, I was 11 or 12 I started to tell the other kids about my heart but suprise suprise they did not believe me so I eventually told my mum who went and spoke to the head teacher. I was very embarrased by this as I did not want anyone else involved but I am glad that she did because the head teacher put on a health day at the school so at last everyone could see that I was not making it up.

I have left my last job because of TGA as I have had to have some time off and beause they never heard of TGA they thought yet again I was making it up.

I was very pleased when I went to top school my doctors told me that I shouldn't be doing sport.

I am now 21 nearly 22 and I am awaiting a pacemaker as my heart is not pumping as well as it should - it's pumping from the middle not the top and my heart rate is between 30 and 50.

Hopefully this will help any one else who has or knows anyone who has had the senning operation.

Please feel free to tell me about your experiences. You can contact Zoe via going through the Mustard/Senning survivors group on Facebook. See Related links

Zoe now (2009)

UPDATE: 21st February 2009

Hey
I am finally getting my pacemaker in two weeks on the 9th of March this is due to my heart going into compleate heart block.

I was feeling really poorly for weeks and even ending up in hospital on a few ocassions but I felt like the doctors in the local hospital didn't really understand what I have wrong with my heart. Somewhere telling that I had TGA and it was now fixed AND I kept telling them that I was NOT FIXED and that I still have TGA. TGA or any CHD for that matter is never fixed, it is never cured. I will always have this for the whole of my life.

On Thursday, 19th February the pain was so bad that my doctor set up appointments for me for the very next day (20th February) so I went to the local hospital and then to Southampton whereby they found out what was going on within minutes as well as a few tests to make sure.

I feel so relieved to be finally getting it sorted out but also as the same time nervous.

Related Links

Mustard/Senning Survivors Group on Facebook

Written by Zoe Dickson

26th January 2009

CHD-UK©

Educating and Raising Awareness of Congenital Heart Defects