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 9th 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 4th 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 25th 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 21st 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
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