Daisy’s Fragile Heart – Support Her Family

Daisy’s Story – Our Brave Girl With a Fragile Heart

Our beautiful daughter, Daisy, was born on 29th April 2025. Before she even took her first breath, we knew she’d face incredible challenges. At our 20-week pregnancy scan, we were told she had a serious heart condition — Tetralogy of Fallot with Absent Pulmonary Valve. It’s a rare and complex condition that affects both how her heart works and how her lungs develop.

We prepared ourselves for a difficult journey, and when Daisy was born, she amazed us all. She was doing better than expected — but more detailed scans after birth showed her heart was even more complicated than first thought. There were problems with the right side of her heart, and she was soon struggling.

Daisy's First few hours

Daisy in NICU

We were briefly allowed to take her home for a few precious days, but everything changed when we returned for what we thought would be her discharge appointment. After three failed attempts to insert a cannula, her lactate levels spiked, and she was rushed into PICU.

Daisy in PICU

From there, it was a roller-coaster. An MRI showed some hope for surgical repair, but a follow-up CT scan revealed that two-thirds of her left lung had no visible blood flow. Because of the risks to both her heart and lungs, we were told no operation could safely be done.

We were moved to Naomi House Hospice for palliative care. At just 7 weeks old, we had to prepare to say goodbye to our daughter.

But Daisy had other plans.

We removed her CPAP breathing support and waited. And she kept breathing. One day at a time. After a week, she was still going strong — so we brought her home. That’s where she is now, on palliative care with help from Julia's House Hospice with no operation available: still fighting, still with us. Every day is a gift.

Daisy’s Medical Conditions

Daisy lives with multiple life-limiting medical conditions:

These affect both her heart’s ability to pump blood and her lungs’ ability to take in oxygen, making any intervention incredibly high-risk. Her prognosis is uncertain, but we’re making every moment count.

Life at Home With Daisy

Daisy’s care needs are constant and complex. She is fed 8 times every 24 hours through a nasogastric (NG) tube, including overnight. Each feed involves drawing up stomach fluid to check the acidity (pH) and ensure the tube is still safely placed. Her feeds can’t be rushed — they are done by gravity, and she often vomits due to severe reflux.

She also takes four different medications throughout the day. These need to be given on a schedule, carefully measured and recorded. Daisy can't be left alone during feeds, and even when she sleeps, we sleep lightly — always listening, always watching.

Daisy's Christening at Naomi's House Hospice

The Impact on Our Family

We have a 2.5-year-old son who needs our love and attention, too. My wife has fibromyalgia, and other health conditions which limits what she can manage. I have mild Crohn’s disease, and stress and exhaustion don’t help.

I’ve had to stop working to care for Daisy full-time. We’re now living off minimal income and have used up all of our savings. Our monthly shortfall is about £1,900, covering things like:

We’re asking for help to cover six months of these basic living costs. If Daisy stays with us longer than expected, we’ll stretch every penny. If she passes before the funds are used, anything remaining will go toward her funeral costs and helping us keep our home as we try to rebuild our lives.

How You Can Help

We never imagined we’d be here — not just fighting for our child’s life, but for our home, our stability, our ability to give Daisy the care and comfort she deserves.

Daisy and her Brother having cuddles

If you’re able to donate anything at all, we are deeply grateful. Every share, every kind word, every £1 helps.

Thank you for reading Daisy’s story. Thank you for keeping her in your thoughts.

With love,

Mikala, Daisy, Arthur and Stuart