“Sara has never let her heart condition define her”

“When you give birth, you expect to hold your baby in your arms. 

But when my third child, Sara, was delivered by caesarean section in January 1991, she was tiny and blue. 

I only glimpsed her briefly before she was whisked away to intensive care, leaving me with empty arms and my heart in my mouth. What was wrong with my little girl? I was absolutely terrified.

When I finally held her and fed her the next day, I was relieved – but noticed something different about her face.

Two days later, her doctors suggested she might have Down’s syndrome, which was soon confirmed with genetic tests.

What I felt in that moment was fear of the unknown, but also fierce love for my tiny girl. Little did I know what was to come.

Worrying signs Sara was unwell

At home, I noticed concerning signs. Sometimes, Sara seemed to pass out for a second or two, her colour changing, her body limp.

After I raised it at her 6-week check, Sara was sent for a scan.

We learned she had Tetralogy of Fallot, a congenital heart disease with 4 structural problems, including a hole between her heart's lower chambers.

She would need open heart surgery at 2 or 3 years old.

The idea of someone opening my tiny, precious baby’s chest and performing surgery felt inconceivable. Until that time, we had to watch her closely and wait.

Those years were anxious. I barely slept, always listening for her breathing. Yet the looming surgery forced me and my husband, Andy, to cherish every day.

In early November 1993, when Sara was nearly 3, she had her heart operation in Bristol Royal Infirmary.

Five hours. That’s how long she was in theatre. When I saw her afterwards, hooked up to wires and machines, my heart broke.

Doctors said it had gone well, though there was a small leak in her heart’s mitral valve that needed monitoring.

We brought her home after 10 days but she seemed sad, her spark gone.

Just before Christmas, I noticed she looked yellow. The doctors said she had a problem with her liver and she was rushed to Birmingham Children's Hospital.

Fighting for her life

Sara became desperately ill. Her organs were shutting down. Her doctors warned that she might not survive. We moved from south-west Wales to nearby to stay close.

Christmas was spent at her bedside. She was swollen with fluid, covered in tubes. Her doctors even suggested we bring her siblings, Joanne and Chris, to say goodbye (pictured above as children with Sara).

A scan revealed Sara's mitral valve was severely affected. She needed a replacement. We gave our blessing.

After surgery, she was fragile and swollen, and on kidney dialysis. But slowly, she began to recover.

Weeks later, I saw her being wheeled down the corridor, awake. Pure joy. She had lost all muscle strength, but then one day she gave me the biggest smile.

The nurses called her ‘a miracle’.

After months in hospital, she came home in April 1994. She later developed endocarditis, an infection of the heart lining.

But she was alive, and that was everything.

Growing up with challenges

Sara’s heart has been monitored ever since.

In 2010, at 19, she had another surgery: a new mitral valve and pulmonary valve. Later, when she developed heart block, she had a pacemaker inserted.

There were many times when we thought we’d lose her. Yet here she is, 34 years old, living life to the full.

Sara loves swimming and bowling. She lives in shared assisted housing nearby and fills our days with hugs and laughter.

Through it all, Sara has never let her condition define her. She proves children born with congenital heart disease can grow up to have fulfilling lives.

Talking to other parents helped us cope. The doctors and nurses who cared for Sara were extraordinary. Their dedication saved her life.

And research is vital. Without advances in surgery and treatment, Sara might not be here. That’s why I support British Heart Foundation (BHF).

Celebrating Sara’s life

Alongside Sara’s journey, I found my own way of coping: running. In my 40s and 50s, I began taking it seriously.

One day Chris, my son, said, ‘Shall we run the Swansea half marathon?’. I did - and I haven’t looked back.

Last October, I ran the Cardiff half marathon in aid of BHF. It's the perfect way to honour Sara’s journey and give back.

Being Sara’s mum has taught me resilience, patience and gratitude. I treasure the small moments: her smile, her giggle, her hugs. Even in the darkest times, there can be light.

Sara is my miracle. Proof that hope can carry you through, that love can sustain you and that research changes lives. 

I share Sara’s story for every parent facing the terrifying reality of a child with a congenital heart disease. I want them to know survival and happiness are possible. There's a future beyond fear. 

As I laced up my shoes for the race in Cardiff, I carried her story with me, step by step.

Because this isn’t just her journey, it’s ours. And it's filled with hope and love.”

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