Louise and Co-arcation of the Aorta (CoA)

Louise is 27 years old and was born with CoA.

I asked Louise if she could write about “Living with CHD”. This is what Louise wrote:

I’ve been asked to write about my life living with CHD for a website, which is raising peoples awareness about CHD.

I’m 27 yrs old now but it all started when I was 10 days old and I was rushed from my cot on a Birmingham Maternity Ward to the Birmingham Children’s Hospital Heart Unit (see picture on the right) where I was diagnosed with a Co-arctation of the Aorta and given literally hrs to live due to the seriousness of the condition.

Co-arctation of the aorta is the narrowing of the aorta which is the artery that takes blood from the heart around the rest of the body, so if that couldn’t happen as you can imagine my body wouldn’t function. We are talking about 27 yrs ago when this happened, when medical science wasn’t what it is today and although the Doctors knew of my condition, to perform this on a 10 day old baby was still a great risk. During the operation I have been told I needed several blood transfusions, and developed a hole in my heart and I was seriously ill. All of this of course, was terrifying for my parents at the time, I was their first child and to see me linked to machines keeping me alive, obviously no parent wants to go through that at all. But I survived and I owe my life (quite literally to the work of the surgeons and nurses at the Childrens Hospital). I am very lucky indeed that I didn’t need open heart surgery, it isn’t till you look on my back that you see the scar that tells you that something happened, I live with that and will always do and it proves that against all odds I fought to live in this world.

I had another operation when I was 7 yrs old to re-open the aorta which was called balloon dilation, again it was done at the Birmingham Childrens Hosptial, and this was a terrifying experience personally due to being a young girl in a big hospital needing an operation, which at that time I didn’t understand the reasoning behind it. Sticking needles in my arms for drips and taking blood isn’t the nicest thing, but for some reason it stays with me even now (maybe that would explain my hate of needles, injections etc). Up until the age of 18 I would visit the hospital every year for check-ups and tests, but after that I now go every 2-3 years. My last visit had been in 2006 where I had a MMR scan and several other tests and I was shown in great detail the progress I have made over 20 odd years. Yes, the narrowing will always be there, hence why I am and always will be monitored through a hospital, but I have learnt to live with that.

I know my limitations and am not stupid enough to put myself in any danger. I can lead the life of any normal person, I have 1 younger brother who doesn’t suffer from CHD although it is more common for the condition to develop in boys than in girls. I have been told by my Cardiologist several times that if and when I decide to have children the odds are very low that a child would be born with the same problem I occurred, but that certainly won’t put me off due to my knowledge of medical science, and from knowing the facilities and that the Doctors are even better equipped nowadays to deal with CHD. The only thing I have to monitor constantly is my blood pressure, but again sport works in my favour, I like to keep myself as fit as possible and this regulates my blood pressure for me so to speak.

I’m a great believer in fate and things happening for a reason, and I’ll admit to growing up with CHD was tough for me to get used to. Perhaps I will never ever find a reason and I don’t think I’d want to because it has made me the person I am today.

I’m a fighter in everything I undertake and I won the greatest battle of all to save my life and I have never looked back since.

For more information on Coarctation of the Aorta

Coarctation of the Aorta.
Louise in 2007