The Ups and Downs of Living with Half a Heart

As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here. 

Carys (18, DILV) describes the ups and downs of growing up with half a heart, her aspirations for the future and how LHM has helped her on her journey.

"I was born in 1996 with Double Inlet Left Ventricle, Hypoplastic right ventricle, hypoplastic aortic arch and Transposition of the Great Arteries. At four days old I had my first of four open heart surgical procedures at the Birmingham Children’s Hospital, where I received care until I was 16. This was when Surgeon Mr Bill Braun crafted my ‘handmade’ heart. 

My first three operations were as planned – my Fontan circulation was completed in 2001 and I was lucky that all of my first three ops went well and I recovered pretty quickly.  However, at age eight I went into hospital for a cardiac catheter for a partial fenestration closure, only for Dr Wright to find a large blood clot in my pulmonary artery.  A two night stay turned into over two weeks and full-blown open heart surgery.  I wasn’t impressed – although skating up and down the ward on my drip stand a few days post-op nearly made up for it. Looking back I was so lucky that the catheter happened when it did – if that clot had broken up it could all have been very different!"

Click here to read it in full.

A-Level Results - Congratulations!

We hope that all of our young adult members waiting for exam results today have had the news they were hoping for. 

The LHM Youth Council Chair, Carys, rang the LHM team today to say that she has achieved the A-level results she needed to study medicine. She will be starting her university life in Liverpool in September. Carys will  be able to take her own life experience, living with only half a working heart, into her training to become a doctor. Huge Congratulations Carys.

We also had a great message from young member, Andrew (you may remember him from this great blog piece) who worked hard to get the A-levels he needed to go to Hertfordshire University to study Audio Recording and Production. He told us a bit about what it took to get him to where he is now: "Throughout the exam period, it was very difficult to maintain the balance between working my bum off and not falling asleep in a pile of past papers, calculators and tik taks (best revision fuel ever...) Even though at times, I sucked at getting the balance right by over working sometimes then procrastinating trying to complete 2048 the next. (I did it by the way- it's my greatest achievement to date.) I eventually made it through the exams. Now, 2 months later, having just caught up on sleep, I had a restless night. I wonder why. Oh yeah, some thing called results day... But despite the lack of sleep and a lot of stress, I pulled through and achieved the grades that I needed!"

Andrew also sent us this message, to pass on to other Young Members who have got their results today: To all of you who have achieved what you hoped, well done. And to those who are disappointed, remember this: as much as society tells you that a slip of paper defines you, it doesn't. It's what you do with it that does. You may not get into where you want or move forward in the way that you would have liked, but many more exciting opportunities will open up to you I'm sure, and everyone of you will go on to achieve incredible things! You're awesome - Andrew

Hopefully other Youth members are as happy as Carys was on the phone, and are able to look forward to the future like Andrew. It is such a difficult balance working for exams and managing a complex heart condition.

Did you get your results today too? Let us know how you did by emailing Laura: laura@lhm.org.uk

Nadine McGaffin - My Heart Journey

When asked would I share my story with you all, I struggled to think how I would put this journey into words but I hope that the words I write will be words of encouragement to you all.

On the 9^th September 1988, I was born in Belfast, to all I seemed the healthy, perfect baby girl and that was the case until 5 days later when concerns were raised by my mum about my lack of energy and my inability to cry. That evening I was transferred to the maternity unit attached to the Royal Victoria Hospital for Sick Children in Belfast. The following morning I was taken by the cardiologist on call to the children’s cardiac ward where they performed an echo and discovered that I suffered from a complex congenital heart condition known as hypo plastic right heart with transposition of the great vessels. Within hours of this discovery I received an emergency balloon septostomy, which was followed by open heart surgery the following morning. Six weeks later I left the hospital and remained at home with regular check up’s over the next few years.

Weeks after my 4^th birthday I went for a routine check-up, only this check-up would show that the hole between my two ventricles was beginning to close over so I was booked in the following week for a cardiac catheterization ahead of my fontan surgery that would now be brought forward due to me being in urgent need of it. In October 1992 I underwent my fontan procedure, an experience that I don’t remember in great detail as I was so young, but I do have a few memories like my endless glasses of Ribena at night from the nurses when I couldn’t sleep and becoming so used to the ward that I cried when the doctor said I could go home! I guess in many ways Clark clinic ward became like a home away from home at the time and in the years that followed.

After receiving my operation, I recovered well and was a very fortunate child in that I only really ever attended hospital for review appointments and medication monitoring.  I grew up and still live in a small town in Northern Ireland called Moira, where I attended the local primary school. It was such a small school at the time it just felt like family. While at primary school I took on as many of the activities as I could alongside the other children in my class. The only difference that I had from other children was that when going out to play I had my hat, scarf and gloves on to keep me extra warm and if it was too cold and my lips were blue, the teacher would make me stay inside. I always took part in sports day at school and was able to join clubs such as choir.

I guess when I began High School, life began to change slightly and the differences between myself and others in the class were more noticeable. I struggled with the weight of my school bag, so I was the only person in my first year of High School to have a locker. All my friends thought it was great, I didn’t!!! To me I suddenly felt different and I struggled with that. I also found that my ability to take part in PE was beginning to decrease in not being allowed to take part in hockey and other contact sports and eventually it reached the stage that I didn’t take part in PE at all and instead went to the library. On games day the teachers granted me an early pass and I left school at lunchtime that day. In the first few years I didn’t enjoy this noticeable difference from others in the year but as I got older I found that a half day in the week was a treat that no one else in the class would get and so I embraced it.

While at secondary school I had a number of inpatient stays in hospitals that meant that I missed some school but I always tried to get back to school as soon as possible. One example of this was when I had my teeth taken out and because of my condition I had to have this done in the hospital. Despite the fact I’d had the roof of my mouth cut open and my cheek bone broken to get the teeth out I still went to school the next day. I loved my school days and I was blessed to have such a family-like school and teachers who would have gone out of their way to ensure that I was cared for and anything I needed they would have provided for me. This support and encouragement allowed me, despite my complex condition, to go on to achieve 9 GCSEs, 4 As Levels and 3 A levels. School were fantastic in aiding me through my exams with the support I needed in relation to my heart. From extra time in my exams if necessary to a seat at the back of the room so I could slip out to the toilet whenever I needed to… diuretics in the morning made exams a nightmare at times!!!

Alongside school I was able to join after school clubs like choir, band and Christian Union and outside school I even found the energy to join the local Brownies and then Guides, where I was best Brownie 3 years in a row for the best attendance. Through Brownies I also had the chance to go on pack holidays with the girls and much more…The only thing I had to remember that the other girls didn’t was I had to take my tablets!! Not always an easy task when you’re having fun!!!

Throughout my teenage years I did the same amount of activity as my friends and although at times I tired easier I did my very best to keep up.  I believe that it is important your friends know about your condition. My friends always did and were brilliant at looking out for me and helping me if I ever needed it.

When I was 18 years of age, I became a volunteer at the local Church youth centre that I attended in my early teens and this sparked my love for youth work, a passion that I have continued on to this day. Through my role as a youth worker I have been on outdoor adventure weeks, zip lined over lakes, completed high rope courses, caved and much more in the world of outdoors. It allowed me to experience things that normally I would have worried about doing because of my heart condition. My love of youth work has opened doors for me to become a guide leader, setup up programmes for girls, run summer schemes and even taken me to London in pursuit of my dream to become a fully qualified youth worker!! 

As a child you know you have something wrong with your heart, as a young adult you come to fully understand what that something is. I am approaching my 25^th birthday in September and I think the last 5 years have been the hardest for me in terms of my condition and the challenges I have faced but what I have achieved has also been incredible.

At 20 years of age I went off to the big world of University, I went to Queens University Belfast…not wanting to venture too far from home. I embraced student life for all it was worth while holding down 2 part time jobs at home at the weekend as a youth worker and shop assistant. Trying to hold all this together very quickly brought me difficulties and 2 weeks after my 21^st birthday I ended up in hospital, not able to breath properly, exhausted, sore and with chest pains. I had never experienced any problems with my heart since my surgery at 4 and now all of a sudden here I was in hospital and very sick. In the 2 weeks that I was there I underwent many different tests, a catheter and a MRI. I had developed an infection that had never cleared. It had become a virus and had multiplied my cardiac symptoms. With a few months of rest and learning to pace my life better I would be back on my feet again. While in hospital that time I made a new friend. He too was a young adult with half a heart and it was amazing. For the first time ever I had met someone who totally understood what I was going through and how I felt. We laughed together, moaned together and gave each other invaluable support and advice. Having never taken warfarin before this transition was difficult for me and he was able to help me and give me great advice when my blood failed to be in range! Even after that hospital stay we remained great friends. After leaving hospital I was forced to cut my university hours to part time to enable me to fully recover. It was great in the months that followed but a year later when I was back on my feet it was frustrating. Rather than moan about it I saw it as an opportunity to try new things and so I became a volunteer classroom assistant one day a week and then began to volunteer with Children’s Heartbeat Trust, the charity in Northern Ireland that works with children with heart conditions. Also that year I began training in the gym and completed my first 9 mile marathon walk in Belfast. The following year I decided to embark on a new adventure and I went to London to begin a youth work degree, I studied in central London 2 days a week and worked as a youth worker the remainder of the week in Surbiton, Co.Surrey. I loved my London life and the fast paced life that I had acquired but very quickly learnt that my heart didn’t and 8 months later I returned home to Northern Ireland. This time I needed new medication and a lot of rest to make my heart better and so I rested up and took life easy. This experience showed me that although I think I am like everyone else, at times I’m not but that’s ok, because although I came home early the achievement of doing it at all was amazing. Since coming home I have had a number of inpatient stays, 3 in total to get my medication sorted and I am happy to say we have finally got it sorted! Each visit I embrace and count as a few days off from life! Every experience makes you that little bit stronger. Although I have had a number of inpatient visits in the last year, it has also been a year of great achievements. My recent catheter showed no change in my heart since my fontan 20 years ago, I returned to my studies at Queens University Belfast and graduated last month with a BA Hons in English and Theology, I completed my second 9 mile marathon walk, was heavily involved in the campaign to retain heart surgery for children in Northern Ireland, through sharing my journey in Parliament buildings, undertook the role of leader in charge in my Guide troop, became an employed youth worker in the evenings and just last week I got my first ever full time office job.

Also as this goes to print I will have undertaken my first ever half marathon walk as well!!!

I really want to leave you with some words of encouragement, I may have half a functioning heart but I do not have half a life. I never let my condition discourage me from attempting my dreams, sometimes it doesn’t work out but I give it a go.  If I could give two pieces of advice they would be ask questions…no matter how stupid you think it sounds ask it. I ask the stupidest questions at times but the doctor and nurse will always listen and answer the question and through those questions I understand so much better my condition and the life I can have with it. Secondly if you ever get the opportunity to meet others with half a heart, do it. A friendship like that is invaluable and so special, we all have our own individual journey but we can support and encourage each other in that journey.

Nadine McGaffin

University Life (with a heart condition).

An 18 year old member of Little Hearts Matter talks about starting university, and whether their condition has affected uni life. More posts to follow over the next three years!

Well, I’m done with 14 years of compulsory education!!!! Yet, I decided that I wanted to take my education further and get a degree in Welsh. Applying to Universities through UCAS was pretty easy. You basically put in your GCSE and AS Level grades, chose 5 universities that offer the course you want and applied for them. The difficult part was writing a personal statement, detailing your talents and experience. I don’t know about you but I find it really hard to write nice things about myself. So I wrote endless drafts… Luckily with a bit of help from my Dad and my teachers I managed to write an OK statement.

Once you’ve done all the applications you basically have to wait to be accepted or declined. Luckily, even though I hadn’t had the best results in one of the subjects I was applying for, I was accepted by Bangor, Swansea and most importantly, Aberystwyth!! (On the condition I got my grades of course). I did my best in all my exams and on results day, I realised I hadn’t got the grade in the one subject but had in Welsh. Aberystwyth changed the course for me and I accepted it as my first choice, it being my dream uni!! Nothing to do with it looking like Hogwarts of course ;)

But it does look a lot like Hogwarts...

So here I am, 2 months into the course, and I LOVE it!!!! The people, lecturers and social life are amazing!! It has been a little bit hard for me though. For a start, The University is on the top of the biggest hill ever!!! Bad planning on my part. However, the buses run frequently and the taxis are rather cheap. I do use my disability living allowance to pay for the taxis as an extra help. If you don’t receive DLA I’m sure Jon or Suzie can give you plenty of information!! Unfortunately, all my lectures happen to be right at the bottom of town so I don’t even have a chance to stay on campus. Ah well, I still love it here!!



The disability advisors at the university have been really helpful! They know all about me and have made provisions for everything. I get extra times in exams and also as my arms get really tired when writing, I get to use a computer in the exams. The disability advisors in all of the universities I applied for were really helpful. Swansea sent me a form to complete, explaining my condition and things that I may need to make my stay comfortable. Bangor gave me a call and asked questions again about provisions they could make for me. Aber didn’t do as much but now I am here they are very helpful and check up on me as often as they can!

So far, University has been an amazing experience, and hasn’t really been disrupted by my condition! As long as you make your university aware of your condition, they will do their best to make sure you feel comfortable as possible there.

Editor's note: UCAS have a page all about applying if you are a student with a disability: click here for the link. In many cases, provision and services for disabled students at university will be better than at secondary school, and it's always worth getting in touch with a university beforehand to talk about this. As Hannah mentions in her article, universities will always get back to you and make sure that they fully understand your needs, and explain how they may be able to help accommodate them. You don't have to wait until you're 18 to do this, and uni may be impressed with the organisational and initiative skills that you show by contacting them.