From the moment we found out I was pregnant, excitement filled our lives. Every scan, every flutter, every tiny heartbeat made the experience magical. But at 16 weeks, our world shifted. The routine tests revealed that our baby, Violet, had Down syndrome. Then, during the 20-week scan, doctors found a serious heart defect. It was a lot to take in — fear, confusion, and worry crashed over us like waves.

We were given an appointment with a fetal medicine consultant for a more detailed scan. In a small, quiet room, we were told to prepare for the worst. Termination was presented as an option. Amid the heartbreak, we decided we wanted to know Violet’s sex. Finding out we were having a girl brought a wave of joy in the middle of fear. Even if things turned out differently, we wanted to know her, to picture her, to imagine holding her.

That weekend was one of the hardest of my life. I cried endlessly on the phone to my mum, torn between happiness at having a daughter and terror at the possibility she might not survive. Tiny Tickers became a lifeline — reading stories from parents who had faced similar challenges gave me a glimmer of hope amidst despair.

When the consultant in London conducted a thorough scan, we learned that Violet had a rare congenital heart condition called Tetralogy of Fallot (ToF), later confirmed as Double Outlet Right Ventricle with ToF (DORV with ToF). This meant her heart had multiple defects affecting blood flow and oxygen levels. The doctors reassured us: while her heart would need surgery within the first year of life, the procedure had been performed many times successfully. We left London anxious but relieved, knowing we could continue with the pregnancy and that Violet was fighting hard to survive.

Throughout the pregnancy, we had frequent check-ups at both our local hospital and in London. Each scan brought comfort and connection, even as we were classed as high-risk. At 35 weeks and five days, a scan showed restricted fluid to her umbilical cord, prompting an emergency C-section. Our plan for a natural birth vanished in a moment, replaced with the urgency of getting Violet safely into the world.

Violet arrived at 5:26 pm, weighing 5lb 10oz, and was absolutely perfect. She needed a little oxygen in theatre before being taken to the NICU with Daddy, while I recovered. That first night apart was agonizing. The first cuddle at 4 am the next morning is etched into my memory — fragile, tiny, and already a fighter. She had an NG tube for feeding and needed monitoring under a light for jaundice, but she was alive and strong.

The following days in the NICU taught me resilience, patience, and the power of small victories. Every three hours, nurses guided me through feeding, monitoring saturation levels, and caring for her. I could connect with Violet while feeling supported and safe. Two days at home were a brief reprieve before a long journey to London confirmed the full extent of her heart conditions. Doctors explained her rare DORV with ToF, and while it was overwhelming, they gave us clear instructions for monitoring her health and preparing for surgery.

For eight long months, we watched, worried, and waited. Violet’s medications, her high-calorie milk, and constant monitoring were part of our daily life. She was our precious little warrior, and we never wanted to take a single risk with her health. The day of her surgery arrived, and though terrifying, we felt prepared. Stories and guidance from other parents helped ease the shock of seeing Violet connected to so many machines after the operation.

Violet recovered well. She came home with an NG tube for a few months, and we celebrated our first Christmas together. Her heart could not be fully repaired at that time — further surgeries will be needed in the future — but she thrived. Her determination, her spirit, and her tiny victories inspired us daily.

To mark her journey, I got a tattoo: a heart with an ECG line, the three arrows representing the “lucky few,” and the words “Love doesn’t count chromosomes.” Every time I see it, I remember her courage and resilience, and it gives me strength.

Violet is now 28 months old, full of joy, determination, and love. She meets milestones later than her peers, and yes, she faces daily challenges, but every smile, every laugh, every small achievement is a celebration. Her Instagram page,violets_extra_adventure, documents the world through her eyes — a world of love, bravery, and unshakable spirit.

We are grateful for the support of Tiny Tickers, the hospital staff, the communities we have found along the way, and our family and friends. They have helped us navigate fear, uncertainty, and challenges with knowledge, compassion, and hope. Down syndrome and congenital heart disease do not define Violet — her personality, her laughter, her love, and her determination do.

Violet is a true warrior, and being her mum is the greatest gift. Her life is a reminder that love is stronger than fear, hope brighter than despair, and that every heartbeat, no matter how fragile, is worth celebrating.

Love doesn’t count chromosomes.