Lagan's Foundation

Meet Emily and read about her life with congenital heart disease

My life with a Congenital Heart Disease

The beginning

My life with a Congenital Heart Disease (CHD) – Left atrial isomerism, azygous continuation of the IVC, dextrocardia & pulmonary atresia.

Hi, I’m Emily and I was born in 1989, with congenital heart disease. When I was born, on 9th September, apart from being a tiny 4lbs 10oz, it seemed as if I was a normal, healthy, baby. My parents always knew I was going to be a tiny baby as there was a problem with the way the placenta was developing, which they had been told about. So, despite my size, with things seeming normal, I was sent home and I did well for the first two months.

It was actually a pretty routine appointment, to have my reflux looked at, that cause the doctors to perform my first chest x-ray and it revealed a lot. I was rushed to the Congenital Heart unit at Great Ormond Street Hospital, in London, where the suspicions of our smaller, local, hospital, were confirmed; I had several things wrong with my heart and the surrounding arteries. That same year (after some fattening up – I was still tiny) I was taken into theatre for a left sided Blalock-Taussig shunt leaving me with a scar on my left side.


Operation number 2

My second operation was when I was four-years old, in the spring of 1994. My first open heart surgery was a Glenn shunt and I was in theatre for at least three-four hours. I don’t remember much apart from a trip to the bathroom to get a shower and seeing my bright red, fresh, scar. I don’t even remember how I felt but seeing it made me know I was different. I mean, I already sort of knew I was different but at such a young age it wasn’t clear and I didn’t really understand.

Operation number 3

My next operation was December 1998. This time I was old enough to know what it meant to get an operation and I knew it was coming. I also knew it was a biggie and, even more important, it was kind of new. The operation was a completion of total cavopulmonary connection (also known as a Fontan) and I was getting the latest version, I was under the impression that I would come out of hospital and be “fixed”. After this I wouldn’t be blue anymore and I’d be able to run round with my friends. Unfortunately, there were complications and I ended up staying in hospital until April 1999.

I’d been out cold and missed Christmas and New Year and my family, and sister had their lives turned upside down. My mum spent a lot of time with the doctors and nurses, even getting them to teach her how to change my dressings herself, as well as receiving support from the family liaison officer.

Eventually I was allowed home, but I wasn’t well enough to get back to normal life. I had a wheelchair, an oxygen tank and visitors from the hospital coming to check my blood oxygen saturation level on a near daily basis. I was put on Warfarin (to thin my blood) among a host of other drugs (tiny white tablets and some orange liquid I used to have to measure out in a syringe.) I wasn’t physically strong enough to go up and down the stairs and even getting a bath was an effort.

There were times where we did all wonder if I’d ever get better. Then, one day while out with my mum food shopping, I asked her if I could walk round the shop. It was a huge step in a huge shop and I did have to use my wheelchair again about halfway round, but I did it.

From there I started getting stronger and stronger and I started going back to school on a part-time basis and finally life began to look normal again. I was called back into hospital for routine check-ups and tests on a yearly basis and got used to it. Also I had a few catheter procedures and one or two blood transfusions, but I began to look for the positives and kept rank, with my mum, of the best hospital meals I’d eaten.

My dream of being a teacher never left me and I went to college to do A Levels and then I studied for, and gained, a degree in English. I graduated in 2011 and eventually went on to teacher training. All through this I kept attending annual check-ups at hospital and taking warfarin, daily.

My Life Now

Last year I got married and turned thirty, and even though I’m not teaching any more, I’m pretty much living the life I wanted. I’m still seeing my cardiologists and having regular check-ups. Through life, I’ve relocated to the North West and I’m now seen by the team at Leeds General Infirmary. While I’m still only new there they are lovely. I’ll be having a face-to-face check up every twelve months and a telephone consultation between each face-to-face. Additionally to this, they want to do an MRI and an Exercise Test every three years as well as a liver-scan ever year (it’s common for patients with the Fontan to see changes in liver function, too.)

As I’ve grown I’ve learnt more about my condition (congenital heart disease), the expectations surrounding what will happen to me and the procedures I have had. I know that no question I could ask my cardiologist would seem “silly” but that some of them are harder to answer than others. I try not to focus too hard on what lies ahead because, from to hospital’s point of view, I’m doing pretty well. It is scary, not always getting answers but I really believe that my dreams for my future helped me get here. Some days I do feel like I have a congenital illness, and I need to take it easier, but they are few and far between. On the good days I can do 5-7k walks around my local area; dance with my friends until 3am and clean my flat from head to toe.

Every day I try and take stock of how lucky I am; focus on what I have, not what I’ve missed out on, and be thankful for the amazing doctors and surgeons who helped me get here.

CHD (Congenital heart disease) life isn’t always easy but it helps me to be the most grateful person I can be and if, by sharing my story, I can help others I am happy do so!