Heart dad Kapre wanted to make sure his son Raeyaan knew everything about his heart journey when he got older, and so Kapre committed to writing everything down in a book – ‘The Story of Raeyaan’.
In this blog we share the some of the first chapters of this amazing account. The book follows the family’s journey from finding out they were expecting a baby right through Raeyaan’s first treatments and a long stay in hospital during the COVID pandemic. To finally bringing their baby home for the first time.
PROLOGUE
My beautiful boy, Raeyaan. If you are reading this, it’s because I have done what every father should do – raise you into a strong, kind, and loving person. You are finally ready to hear about the story of how you came into the world.
I hope that reading this helps you to realise just how loved you are. Your mum and I’s life so far has been a fairytale – a successful business, a gorgeous wedding, a house to call our own. And then along came you, our firstborn son, our most precious bundle of joy.
Having you was one of my greatest achievements in life. As you read, you will find out that the pregnancy was not plain sailing, and there were plenty of heartbreak and tears along the way.
It has been a rollercoaster of emotions. Through all the ups, all the downs, the guilt and the pain, the ecstasy and the joy, there has been nothing but an intense, overpowering love for you. Having you changed me and my life for the better. Everything I do is for you, including this book.
I hope you enjoy reading this book – it’s a love letter, from me to you.
Love,
Dad
CHAPTER 1 THE BEGINNING OF OUR JOURNEY
A whole year of trying for a baby had taken its toll. Your mother and I were physically and emotionally exhausted, and beginning to lose hope … On reflection, I now understand that perfection takes time – you were destined to be ours, we just had to have patience. The added stress and pressure had a huge impact on the time taken to conceive you, and I wish I could go back and tell myself then it would all be okay.
After a year of trying, medical checks, blood tests, urine tests, fertility tests, and concocting our own science experiments at home with the different home testing kits and lab equipment, we finally got the all clear that there were no medical issues that were preventing us from becoming pregnant – only time and patience were the key.
With the reduction of stress, all of our barriers fell away – two months later, we received the best news we had ever gotten. Your mum was finally pregnant, with the baby we had so desperately prayed for – YOU!
After two devastating miscarriages, your mum was over the moon … Knowing that you were growing in her tummy day by day, filled me with overwhelming hope and love. I lay in bed with her, tears rolling down my cheeks and joy spreading through my heart. My life was complete. I was finally a dad.
CHAPTER 2 THE FIRST SCAN
Our first time seeing you was supposed to be the most exciting time of the pregnancy … Your mum’s belly was getting rounder every day. They were spreading jelly on her stomach for the scan. She was growing you so well and I could not believe that she was bringing me our greatest joy in life.
We waited with bated breath, and finally heard the sound that filled us with relief – your heartbeat, the confirmation that you were alive. It was music to our ears. Our joy was short lived. The nurses, who were once chatty and bubbly ladies, suddenly started whispering to each other tensely. We could feel our hearts sink. You could cut the atmosphere in the room with a knife.
They slowly zoomed in to where your heart was located, and I could feel my stomach turning in knots. When they fetched another nurse to confirm their opinion, I could feel a lump in my throat beginning to form. I squeezed your mum’s hand tightly and tried to take deep breaths. Whatever came our way, I knew your mum and I would work as a team.
They finally confirmed to us our worst fears – your heart wasn’t presenting as normal, and they would need a professional cardiac specialist to examine it. They booked us in as soon as possible.
Thanking the nurses, we left the hospital clutching your scan picture, still trying to maintain positivity, but filled with uncertainty about the road ahead of us. Little did we know the twists and turns our journey was going to take.
CHAPTER 3 TETRALOGY OF WHAT?
Each appointment brought us a fresh wave of worry that we would hear the worst news imaginable. I had to be strong for the family, but inside I was terrified that I would never hold you in my arms.
We sat in a hospital room with two very experienced cardiologists, dressed in white lab coats. Your scan was projected on the screen, and although I was relieved to see your little hands and feet wriggling, I just wanted the doctors to confirm what they were thinking. As they murmured away, rolling the device around your mum’s belly, they stated “Don’t listen to us whilst we talk, we’re just having a discussion about everything”.
As if that was supposed to reassure us. The medical terms they were exchanging with each other seemed as if they were talking a different language – there was no way of us understanding anyway. Realistically, there was a tiny part of us that didn’t want to know.
As your mum gazed at the ceiling, I could tell she had zoned out. I didn’t blame her. Until the cardiologists gave us an official diagnosis, we were still in our happy baby bubble. We were completely in the dark – to your mum and I, we could hear how strong your heart was, thumping away rhythmically during the scan. To us, your heart on the scan looked absolutely fine.
What on earth were the cardiologists going to say? Still, we knew they were the professionals, and we had to have the same patience with discovering your condition as we did to conceive you. Finally, they seemed to make a confident decision, and told us to meet them in the next room. As we walked in, every step felt like walking a mile. Our bubble was about to burst.
“I’m very sorry to inform you that the scan revealed that your baby will be born with a heart problem. The medical condition is called Tetralogy of Fallot, also known as TOF. I’m so sorry to tell you this, I know this must be difficult.”
Although the doctors were speaking, their words slowly faded away, replaced by a ringing in my ears and a heaviness in my heart. Tears began to roll down mum’s cheeks, she began to sob as I gripped her hand tightly. My body and brain was bombarded by emotions – shock; how had this happened to my little baby? Devastation; would you ever live a normal life? Curiosity; what on earth is TOF and why had I never heard of it?
The doctor calmly explained that TOF is a condition where a hole has formed in the heart as the heart has not developed correctly. As a result, there are four defects commonly present: ventricular septal defect (VSD), pulmonary stenosis, a misplaced aorta and a thickened right ventricular wall (right ventricular hypertrophy).
We asked an onslaught of questions, which the doctors answered so professionally to try to put our minds at ease. They explained that TOF was linked to a number of other defects, such as a possible Chromosome Defect, narrowing of the heart valve, deformed/ tilted heart, Down’s syndrome, DiGeorge syndrome, low immune system, schizophrenia, learning difficulties, the list was never ending. With each new possible complication, our hearts grew heavier, but we stayed strong for you. It was our only choice.
The doctors said “The good news is, we’ve detected it early, meaning you have the choice to intervene.” I was confused. I heard the word ‘intervene’ echo around my head. I stopped the cardiologist as she was talking. “Sorry, what do you mean by intervene?” “I mean have an abortion.” I felt like I had been hit by a bus. I could not believe that a medical professional was suggesting this. Was the condition really this deadly?
Your mother and I were swamped by an overwhelming amount of pain. It was getting harder and harder to keep calm. This was never, ever an option we would ever consider. Today was without a doubt the worst day of our lives. We had never received news like this before. Our heads were tangled and confused with thoughts, decisions and emotions, crashing into each other repeatedly over and over again.
Realising the look of anguish on our faces, the professionals handed us a cluster of leaflets, and told us to take time to think. For us, there was no decision to make whether to abort or not; after years of trying, hoping, and praying for a miracle, we finally had you and we weren’t letting you go. You chose us to be your parents, and we were going to educate ourselves on how to get you through this. Your life depended on it.
CHAPTER 5 THE NEXT STEPS
A week after our devastating meeting, the cardiologist called us back in to discuss the following options, each of them with their own set of complications:
- Conduct a test to diagnose any syndromes or genetic
problems.- To abort you.
- To carry on with the pregnancy as normal.
As you can see, there was no easy option. The first option would mean a Chorionic villus sampling test, where a sample of the sac fluid inside mum’s belly is taken. Due to the nature of the procedure, there was a risk of 1/150 that it could cause a miscarriage as the sac could rupture. I shuddered at the thought. The odds seemed extremely high when considering your life – were we playing with fire?
The second option was not even an option, we didn’t want to discuss it. Imagine if we aborted you, after trying for a baby for so long, and then finding out we could never conceive again. Your mum and I’s perfect relationship would have been destroyed. The thought of aborting you turned my stomach. It wasn’t happening.
The third option seemed the safest, although the cardiologist tried to be realistic and warned “There is a high chance your baby will have 1 or all of these problems we discussed.” Your mum and I were united as a couple. If you arrived with major disorders and defects, were we prepared to care for you, no matter what? The answer was simple. The answer was yes – NO MATTER WHAT.
Finally, after our decision was made, it was time to tell the family. We went on to explain to the family what we had been talking about and discussing. We shed so many tears sharing the information with our family as every time we talked about it the emotions came flooding back.
Above all, what was clear was how loved you were already, little man. Every family member was so supportive of us, and so excited to meet you. I knew that, surrounded by this love, you could overcome anything.
Why was it important for you to write this book?
I really wanted to share our family’s story! Especially to share it with the people who have endured the same or similar experiences.
I think if I had this book to read at the time, maybe it would have really helped me understand the journey ahead.
Kapre, Raeyaan’s dad
Do you have a story you want to share? At CHSF, we celebrate the amazing heart heroes and families we support in our region. We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit and the amazing clinics and staffa cross the region. Share your story here.
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