I'm Samuel (not Sam), born on 23rd April 2014 with four life-threatening heart conditions.
I want to take this time to tell you all about my story and the reason behind my wishes, so
While my Mummy was at Colchester Hospital attending her 22-week scan, the sonographer
said she could see a dark shadow on my heart; Mummy had to go to Great Ormand Street
Hospital (GOSH) for more tests.
The next day, I had a long and detailed scan of my heart and was diagnosed with four heart
conditions: a hole in the heart, narrowing of a valve, a murmur, defects in my right ventricle,
and an underdeveloped right side. I have a Ventricular septal defect, Pulmonary Stenosis,
Hypoplastic Right Heart Syndrome and Hypoventricula Left Heart Syndrome.
The Doctor told my Mummy and Daddy that I may not survive my birth. However, if I did, I
might only be here for 20 minutes. If I were strong enough to live even longer, I would have
surgery, but the operation would not come with any guarantees.
Mummy and Daddy faced a dilemma; the Doctor gave us two options. The first one was for
Mummy to have to me naturally and give me a chance to live. The second, I'm afraid, was to
terminate my birth.
They left GOSH extremely upset, confused and unsure about what they should do. Mummy
and Daddy had to speak to specialists for advice and support to decide what the best option
for me would be. Did I have a chance of living? What option would mean that I wouldn't
suffer? Would I make it past 20 minutes? These were some of the questions that my parents
faced. In the end, the Doctor booked a termination, but my Mummy couldn't go through
with it. She wanted to give me a chance; she believed in me!
The next few months were stressful, obviously, but Mummy remained positive. Every time
she felt me move in her tummy, I gave her hope.
I arrived at 6.23 am on Wednesday 23rd April 2014 at UCLH, weighing 6lb 14oz; I survived
those 20 minutes.
My new home was in intensive care; and, I had only medicine and machines keeping me
alive. At six days old, I had my first open-heart surgery; the Doctors performed a BT Shunt
(Blalock-Taussig Shunt). The operation meant I'd be able to get more blood to my lungs.
Everyone was pleased about how well I was doing; I defied all odds to get this far- they
called me a GOSH miracle baby!
I had my second open-heart surgery at four months old. It was an operation to modify the
original BT shunt into a cavopulmonary shunt. That increased the blood flow to my lungs
and reduced the amount of work my heart needed to do.
The following procedure was a Fontan-type operation. It increased the amount of oxygen in
my blood and allowed it to flow from the upper part of my body into my pulmonary artery.
The pulmonary artery takes the blood to the lungs.
My last surgery was the second part of the Fontan-type operation; I was two years old. The
procedure involved redirecting the IVC blood to the lungs; IVC is a vein that brings oxygenpoor blood from the lower body back to the heart and the lungs.
So far, I've had I have had two balloons in my lungs and various surgeries. I surpassed
Doctors expectations, and I managed to start school- I made it to year three! I have lots of
friends and fantastic teachers, but I also love movies like The Avengers and Star Wars.
On 22nd September 2021, I had a regular check-up at great Ormond Street Hospital.
Usually, these check-ups go well, and I get to go home. However, this time, the consultant
explained that my heart and valves have a lot of scarring; I have tissue damage. He said that
he'd be surprised if I make it to my 10th birthday, and my family and I should enjoy every
moment we have together—my Mummy, Daddy, and sisters and I should make as many
memories together as we can.
To help me make it to ten years old, he advised me to stay calm and not overexert myself or
make myself out of breath. But come on! I'm a seven-year-old boy that loves to play with
my friends in the playground! I love to run, and I love to play; I love to chase my mates all
Mummy and Daddy have a big job trying to keep me calm and keep my heart working at a
steady rate as much as they can. As a family, we understand the situation is hard to
comprehend; knowing what may be, we want to make as many memories together as we
I have made a wish list of things that I would love to do, including creating lasting memories
for my family. We're fundraising to make my wishes come true, and we ask you kindly, from
the bottom of our hearts, for you to help achieve our fundraising goals.
Thank you for reading my story. I hope I have informed you about rare heart conditions that
affect many other children in the world and me.
Now that you know my story, I hope you'll be there to enjoy memories and help support us
to raise funds to make them.
Lots of love, Samuel x