Interview from the heart

Updated: Feb 7, 2019

Many families all around the world are effected by congenital heart disease, one of these being hypoplastic left heart syndrome where children are born with only half a working heart. They start searching for answers concerning what the future will hold for their child. #classonglass #hlhs #hypoplasticleftheartsyndrome #chd #hlhsawareness #chdawareness #heartmum





So I decided to write this blog using two young adults, one male, one female. ( one of them being my son Lee ) who are both eighteen and have hypoplastic left heart syndrome. All the questions they answer here were asked from parents and parents to be of children with hypoplastic left heart syndrome other heart conditions. My aim in this blog is hopefully to give them some peace of mind. I asked them both the exact same questions, hope you enjoy reading them.




Ladies first


I'd like you to meet Olivia, she is eighteen, lives in London and has hypoplastic left heart syndrome.


All of Olivia's operations were done at Guys hospital by David Anderson.


Olivia had her stage one operation at five days old, stage two when she was three months old, she had gone in to heart failure two times and they never discovered why, this was very risky as she had poor heart function. Stage three was done when Olivia was three years old.


Olivia's mum Hannah wrote " My strongest memory of stage two was when David Anderson was telling us that she may not survive the operation as her heart function was so poor and his teeth flew out. He caught them and put them back in and Richard, our lovely nurse Emma and my self couldn't stop laughing (which seemed so inappropriate!)


Olivia was born at Guys hospital and they were lucky at the time as the maternity and the pediatric ITU were in the same building. They have since build the Evelina children's hospital.


Now for the questions


1. What was your earliest memory about learning about your heart condition and how it would effect you?


My earliest memories are being in hospital with my family and friends, at the time I was around two or three, so I don't remember if I knew what was happening but I have always known that I have had half a heart.


2. How do you feel about having half a heart?


For most of my live it has not bothered me at all, getting out of PE cross country runs was always a positive!! However as I have got older I have come across more things that I will not be able to do due to my condition. For example, getting piercings and tattoos or even drinking with friends. I also get tired and out of breath more easily. But overall I am able to live a normal life as it doesn't effect me day to day.


3. How did you cope during exam time?


I'v never known any different from having the condition so I'm not sure exactly how it affects me during exams, but I was able to achieve all As and A*s at GCSEs and now studying A level chemistry and Biology with offers to study Zoology at university. I do get tired and worn out easier but I have learned to pace myself and just do my best without making myself ill. I do get stressed more than the average person, but I feel that is to do with the fact I suffer from an anxiety disorder.


4. Do you have lots of friends? and how do they feel about your heart condition?


My heart condition does not affect my ability to make friends and I am never shy explaining to people who are interested or confused about it. Even now I am not bothered at all by my scars and they give me an amazing story, when I was growing up it could be difficult having a scar as my peers would point it out, never in a horrible way but just because they did not understand why I had it.


5. Did you suffer in school not being able to keep up with your friends?


Throughout school I never had problems as I wasn't really that into sports, but I could see how it could affect boys more due to them bonding over playing football etc. Furthermore, I have always been able to do any sport I wanted throughout school apart from sprints, Which I'm not complaining about, and I still enjoy horse riding, dance and going to the gym.


6. Did you feel left out in any way during your school days?


No I haven't. All my friends have always been supportive and understanding of my condition and have never made me feel isolated because of it. However going out to parties and drinking has been slightly more difficult due to my condition, but my friends have never pressured me into doing anything I dint feel comfortable doing. The difficulties lie with me not being able to drink as much as others, Which I have learned the hard way, and not being able to get any piercings or tattoos but this has never stopped me from having a good time.


7. Do you tire easy?


Yes I do tire more easily than others which is something that I'v had to come to terms with and has upset me from time to time due to feeling frustrated with myself. However this does not affect me daily and I'm still able to carry out my day as normal.


8. Do you worry about your scar?


When I was younger I was more conscious about my scar due to feeling different than others as it is not something you can hide easily. However as I'v grown up I'v cared less and less about the scar and now it does not bother me at all.


9. Do you have a boyfriend and if so what does he think about your heart condition?


No, I have had one in the past and it never effected him or me in any way.


10. How have you coped in your early teenage years/puberty etc?


My condition has not affected my puberty or teenage years as far as I am aware.


11. How did you cope with the move from the children's hospital to the adults with regards to check ups and hospital stays if any?


I am currently transferring from the pediatric department into the adult congenital department. Throughout the process both my pediatric consultant and my new consultant have been very supportive and always answered any questions I had. I have had one appointment for my kidneys and liver and found everyone there to be as friendly and kind as in the children's hospital.


Olivia's mum Hannah answered this question also.....


We had our last appointment with ( now professor ) John Simpson who has been with us since Olivia was twenty two weeks in utero. So I have felt all out of control and of course you have no say anymore as they are adults....I hate it :) Olivia has an appointment on Wednesday with them and has had liver and kidney function tests that we have never had before so far. I would imagine she is fine as she can't remember lovely Sandra who is still in the ward and does all the measurements and bits who remembers Olivia from birth.


12. Have you ever felt different from your peers, have you struggled with acceptance from others about your heart?


Throughout my childhood and even occasionally now I do feel different from others, but has not been an entirely bad thing. I have always been aware of my condition since I was born and my parents have never hid anything from me, but it has not made me feel bad about myself only occasionally a little self conscious. People overall have never made me feel bad about my condition, going for jobs or volunteering positions, they have been worried about my condition due to them feeling I will be ill or tired and not attend shifts. Apart from this I have never felt any one discriminates me for my condition. I have now been working for Waitrose for over a year and never taken a day off.


13. Do you remember being in hospital for your Fontan? If so what were your memories and do you remember having more energy after it?


This is the only procedure I remember, but I do not remember how I felt before and after it occurred as it was fifteen years ago. I just remember being in hospital with family and friends coming to visit and how friendly all the nurses and doctors were. However my mum does remember this very clearly and says that after I had the operation my energy levels increased dramatically and I could walk around the hospital without trouble and even went out to play in the snow.


14. How do you feel right now about only having half a heart?


At the moment my condition does not bother me on a daily basis. The only consequence I have not come to terms with yet is not being able to get piercings and tattoos as this is something I have always wanted. Furthermore, I am not able to drink as much as others as I feel it more the next day however, this does not have a massive toll on my life and my mother is very pleased.


15. What is your hobbies and interests and is there something you would love to do but you know you cant because of your heart condition?


My main interest is animals and they never judged me for my condition! However there are a few other things which my condition prevents me from doing, for example attending volunteer animal conservation programs in less developed countries which do not have the medical knowledge to treat my condition in the possibility I became ill, which is something I hope to do in my gap year. Furthermore I cannot get tattoos and piercings which I have always wanted, which I find hard.


16. Many parents with children with hlhs will be reading this post, is there anything you would like to say to them?


Although it may seem scary at first and throughout the first few years, now my condition does not affect me on the whole. I have been able to do almost everything I have wanted to and even though at first it was hard to come to terms with it, now I am happy and healthy and do not let my heart condition stop me from doing the things I want. The hardest thing is people not knowing about or understanding my condition as there is no visual sign, therefore when I have missed days at school or not been able to attend certain events people do not understand that it is because of my condition and the fact that I can get ill easier and for longer. Furthermore, people have gotten angry at me in the past for taking disabled seats as i do get dizzy easily and you cannot see my condition.



Thank you Olivia for taking the time to answer all these questions, I'm sure the heart mum's appreciate it. :)



I'd like you all now to meet my son Lee, also eighteen and has hypoplastic left heart syndrome.

Lee lives in a small village called Dundonald which is in South Ayrshire Scotland.


Lees heart condition was picked up a couple of weeks before he was born so I was flown down to Birmingham woman's hospital to have him.


Then the day after Lee was born he was transferred to Birmingham children's hospital. I found this extremely hard as at night time I had to return to the woman's hospital without my baby until they discharged me.


All of Lees operations were done at Birmingham children's hospital, by Doctor David Barron.


Lee had stage one at three days old, second stage at five months and stage three at five years old.



Now for the questions


1. What was your earliest memory about learning about your heart condition and how it would effect you?


I have always known about my heart condition, I just grew up with it just being part of my life.


2. How do you feel about having half a heart?


I don't feel any different to anyone else that has a healthy heart, I was born with my heart condition so its just normal to me I'v never known any difference.


3. How did you cope during exam time?


Exam time was like any other day to me, having half a heart during my exam time did not effect me at all in the slightest.


4. Do you have lots of friends? and how do they feel about your heart condition?


I have small but tight group of friends, who I see most days or speak to on line or through face time. We went through primary school and secondary school together and I'm lucky that most of my friends stay in the same village as me. All of my friends look out for me and check that I'm alright when we are out but they do not treat me any different which is good. I'v went to the pub occasionally with my friends or been to a few house parties, I cannot drink as much as they can and they never force me to try.


5. Did you suffer in school not being able to keep up with your friends?


At primary school I would tire more easily than my friends when we were running around the play ground. At secondary I struggled a little during PE and games period but my teacher was very understanding and reminded me to take it easy. It wasn't always like that however, my PE teacher used to push me and shout at me to keep going and go faster, my mum made an appointment with the school to discus this and I don't know what was said during that appointment.... but lets just say it was like night and day after that meeting ....


6. Did you feel left out in any way during your school days?


No..I was never left out of anything during my school days, my friends and the teachers made sure of that, when we did sports day during primary school, I would get a slight head start so I did not have to run as far as everyone else.


7. Do you tire easy?


The only time I really get tired is when I have to run or go up many flights of stairs, When I was at college they had a lot of stairs which I attempted to climb the first few days not long after starting. I decided just to take the lift after that as the stairs really did tire me out.


8. Do you worry about your scar?


No not one bit, it has been there all my life and its part of who I am.


9. Do you have a girlfriend and if so what does he think about your heart condition?


Yes I do have a girlfriend her name is Imogen, she finds my heart condition very interesting and always asks me questions about it.


10. How have you coped in your early teenage years/puberty etc?


I'm still going through it LOL!!!! I'm a late developer, I am behind my friends but ill get there in the end and I'not worried about it.


11. How did you cope with the move from the children's hospital to the adults with regards to check ups and hospital stays if any?


It didn't really bother me as I knew it was coming, I was ready to leave the children's and make the move to the adults hospital. The only thing I will say is that the children's hospital was a brand new building and was amazing looking and the adult hospital is a bit dull compared to that.


I ( Lees mum ) decided to add my thoughts here as well.......


I found the move to the adult hospital not as bad as I had originally thought it would be as we had not long moved from the old children's hospital to the new children's hospital and because Lee only goes once a year it felt like we were hardly there before the transition started. I do have to say that the adult hospital is no where near as nice a building as the children's but the staff are just as friendly. What I do like about the adult hospital is that it is the MRI they do and not really scans like the children's hospital, I feel the MRI gives a much better detailed picture of the heart.


12. Have you ever felt different from your peers, have you struggled with acceptance from others about your heart?


No as I have always been very open about my heart condition and everyone is understanding. I have never had any negativity directed towards me about my heart.


13. Do you remember being in hospital for your Fontan? If so what were your memories and do you remember having more energy after it?


I do not remember anything at all about ever being in hospital.


14. How do you feel right now about only having half a heart?


I'm used to it and very comfortable with my condition and I feel no different to anyone else, its part of who I am.


15. What is your hobbies and interests and is there something you would love to do but you know you cant because of your heart condition?


I walk every single night, roughly for two miles. I enjoy walking and I have been doing it every night for a few years now. I never miss a night come hail rain or shine. I scored very high on my exercise test and the man that tested me said that walking has helped me as its good for the heart. I also like to play my Xbox and I enjoy gaming. I would love to be able to sky dive, but I know because of my heart I am unable to do that.


16. Many parents with children with hlhs will be reading this post, is there anything you would like to say to them?


Don't be afraid to let them try new things, don't let their heart stop them from giving anything a go. Try not to wrap them up in cotton wool and make sure you try and let them live the life they would if they had a full heart. They will learn their own limitations. I grew up like any other boy my age, I rode a bike, I had a trampoline I played football occasionally but to be honest I'm not keen on football, I played a lot of badminton at school that was fun. I had a good up bringing and never felt any different to anyone else. I don't even think about my heart that often, I'm doing good right now and feeling great.....long may it continue.



So this brings us to the end of the blog, I hope it was interesting for you to read and I do hope it has answered at least some of the questions you may have been asking yourself.


"Half a heart....not half a life"









































0 views
  • Facebook
  • Pinterest
  • Instagram

Class on glass. Proudly created with Wix.com