Emily-Jayne’s CoHD Story

Emily-Jayne was born with Ventricular Septal Defect (VSD) and this is her story which is full of positives. 
I’m Emily. I was born in February 1993. I had a normal birth and everything was fine with me. My mum and dad were overjoyed they had a girl as they had already had two boys.Everything was going great with me until I was about one year old, my lips turned blue and I became ill. My mum and dad took me to the doctors and they told them to take me straight to hospital. This is where it all started…

The doctors took an x-ray of my heart and it showed I had Ventricular Septal Defect which is a hole in the bottom two chambers of the heart. My arteries had also started to develop and then got blocked off and more had grown.

I had my first operation when I was about 16 months that was when I had a shunt inserted to fix my arteries. I then had another one on the other side with another shunt inserted about 2 years after.

In between all of this my mum and dad had another boy in January 1995.

Then the time came, I had the open heart surgery to ‘fix’ the hole in my heart, this was around February 1999 because I remember having my sixth birthday in hospital. I had a “Spice Girls” cake and my class at school all got me presents. I also still have a teddy all the nurses gave me.

I had quite a quick recovery and when I went back to school I was only in year one so I was 6 and I remember having to sit at the office with a friend reading books every break and dinner time because I couldn’t go out, my school was really supportive, they all bought me a present.

I had alot of check-ups through my school life but I never really thought anything about it, I just thought of my scar as a scar and didn’t think it was serious or anything.

Until, I think it was in October 2008 when I had my routine heart check-up and everything was going good, the doctor mentioned something about a narrow artery but said it was nothing to worry about. Then a few days later in the post I had a letter and it was from the nurse saying she forgot to mention about a youth club called ‘Hearts 4 Teens’ they gave me the website address and an invitation to go bowling with them for Christmas.

I thought yeah it sounds good, so I went on the website and noticed a few people had joined and I added an msn address. A girl called Andrea accepted me and that is when my life changed. I felt an instant connection with her. Like we already knew each other, and we soon got it organised to go bowling. We spoke everyday and counted down the days till we got to meet each other. We have so much in common even the same Cardiologist! I couldn’t believe it, and then bowling came. I did get talking to the other girls from ‘Hearts 4 Teens’ on msn so I was looking forward to meeting them too.

But at that point I realised I didn’t even know the name of my condition or anything so I booked an appointment with my doctor and he explained it to me. Because it kind of got to me when other people could say what they had and I was like I don’t know.

I saw Andrea sat down outside the shop that we said we would meet outside and at that moment I’d never felt happier; I wasn’t shy or anything around her. We met up with everyone else and we were dancing to the songs and even though I had only just met everyone I felt like I could be myself for once after all those years of not thinking anything about my heart condition, I didn’t know how meeting people just like me could affect me I was so happy. We were all asking each other what CHD we had and that and I loved it.

I then joined groups on Facebook for CHD’s and got talking to alot more people. It’s really weird talking to someone with a CHD because it’s like I have an instant special bond with them. I have spoke to people of all ages with all kinds of CHD’s.

Having a CHD has affected a few things in my life. I get out of breath easily and don’t really like doing P.E because I can’t do things as well as the other pupils; I have to have antibiotic cover at the dentist so I don’t get Endocarditis, which is a serious infection. I can still do pretty much anything I want and have had a normal life.

I have met some amazing people through having a CHD and I got involved in helping my school with the British Heart Foundation sponsored skipping fund raising, I only helped with the music but I felt better knowing I had participated in raising money for more research of CHD’s.

All my friends and teachers know about my CHD and they don’t really bother to be honest. There are some times that I will wished I died on the operating table but who doesn’t have bad times? We all have rough times and it’s best just to sit back, think about it and get through it. When it comes to relationships boys haven’t really had problems with my scars or anything and if they do bother and if they laugh at me for it then they obviously aren’t worth it!

I really didn’t know what could come out of having a CHD and I am so happy the hospital informed me of ‘Hearts 4 Teens’.

I also have hearing and speech problems. I am slightly deaf, but I get on with my life as best as I can, I enjoy things to be honest, I am so grateful to be here today I didn’t give up, my body was strong enough. Most of all I think I owe it all to the doctor who operated on me. I haven’t met him/her and don’t even know his/her name but someday I hope I’ll get to meet the person who saved my life.

Since Emily has wrote this, she has been informed that she know has the following CoHD’s and repairs:

Ventricular Septal Defect
Pulmonary atresia
Modified right BT shunt and right sided unifocalisation of MAPCAS 24.08.94
Left BT shunt with left sided unifocalisation 19.04.96
Total correction with homograft from right ventricle to pulmonary artery February 1999
Mild pulmonary stenosis
Mild Pulmonary incompetence
Written by Emily-Jayne K
April 2009