Raffi: A Little Boy Fighting for His Tomorrow.2114

In early 2023, I found out I was pregnant with my daughter — a beautiful surprise that filled our home with hope and excitement. The pregnancy, however, was anything but simple. Early scans showed that I had a low-lying placenta, and later, doctors thought they spotted something unusual — an echogenic bowel. Thankfully, that turned out to be nothing serious. But during another check, they discovered something else: a single artery umbilical cord, which meant my baby might be smaller than average and would need extra monitoring.

From that moment on, my pregnancy became a routine of regular hospital scans, each one filled with equal parts relief and anxiety. At one appointment, the sonographer spent what felt like an eternity trying to get a clear view of all four chambers of the baby’s heart. Phia — stubborn even before birth — wouldn’t move her little arm that was covering it. I got up, walked around, even used the restroom, hoping she’d shift position. But she didn’t.

We were asked to come back another day for a follow-up scan. I remember walking out of that room, rubbing my belly, whispering, “Come on, little one, just let them see your heart.” But I never imagined that her heart would soon become the center of our world in ways I couldn’t yet understand.

Months passed, and soon November 2023 arrived — the month I met my miracle.
Labour didn’t go as planned. Phia’s heart rate climbed to over 200 beats per minute, sending waves of panic through the delivery room. My dream of a calm water birth vanished in an instant. Instead, I was surrounded by bright lights, hurried voices, and the sound of machines. They decided to use forceps to deliver her quickly. It wasn’t how I had imagined it, but the only thing that mattered was that she was safe.

When I finally heard her cry, relief washed over me. The world stopped spinning. She was here — tiny, pink, perfect. For a short while, everything was normal. There were no alarms, no warnings, no signs that something was wrong.

The next morning, just before we were about to be discharged, a nurse came in to do a final check. I remember her expression changing slightly as she listened to Phia’s chest. Then she said softly, “I can hear a murmur.”

At first, I didn’t panic. Heart murmurs in newborns can be common and harmless. They ordered an echocardiogram, and I was told it was probably nothing to worry about. But when the results came back, everything changed.

Phia was diagnosed with severe aortic valve stenosis and a bicuspid aortic valve — a serious congenital heart defect that meant her valve was narrowed, restricting blood flow from her heart to the rest of her body. Doctors told us she would need open-heart surgery as soon as possible.

I felt the air leave my lungs. Only hours earlier, I’d been planning our first night at home. Now, we were being transferred to a children’s hospital, waiting for a bed to open up so that surgeons could save her life.

We spent those first few days in the high dependency unit, surrounded by monitors and alarms. I watched my tiny daughter fight for every breath, her chest rising and falling beneath a web of wires. Every beep, every nurse’s footstep, made my heart skip. Then came the surgery — the longest hours of my life.

The medical team at Birmingham Children’s Hospital were nothing short of angels. They spoke to us with such calm and compassion, even as they prepared to open my baby’s chest. I will never forget their kindness, or the way they spoke to Phia — as if she could understand, as if she mattered deeply to each of them.

After her surgery, we were moved to intensive care. I remember standing beside her bed, watching her tiny chest stitched and bandaged, her heart now mended but still fragile. She looked impossibly small against the machines that surrounded her — but her spirit was enormous. Slowly, she began to recover. Slowly, we began to breathe again.

Even now, I find it hard to understand how her condition went undetected. We’d had so many scans — two of them focused entirely on her heart — and yet her aortic valve had quietly deteriorated to a severe state without anyone realizing. It’s a question that still haunts us, but one that has also taught us gratitude. Because even though it shouldn’t have been this way, she is here. She is fighting. She is thriving.

Today, Phia is doing well. She still needs six-monthly checkups and may face more procedures in the future, but for now, her heart beats strong and steady. Her laughter fills our home, her curiosity lights every room, and every moment with her feels like a gift we’ll never take for granted.

To the doctors and nurses at Birmingham Children’s Hospital — we owe you everything. And to every parent standing in an ICU, watching their baby fight, I want to say this: there is hope.

Our little girl’s heart may be mended with scars, but it beats with love, courage, and a strength that continues to inspire us every single day. 💖