Help babies with serious heart conditions

When Ivy was born, her parents had no idea that something was wrong with her tiny heart. Emma’s pregnancy had felt completely normal.

It was only after her six week check, when the doctor heard a loud systolic murmur, that Ivy was diagnosed with a large VSD (hole in the heart).

"Nothing prepares you for the moment someone tells you there is something wrong with your baby’s heart.

When I was pregnant with Ivy, everything felt normal. Her scans were reassuring, and we carried her with all the usual hopes and excitement that come with waiting for our daughter to arrive. We did not know then that her heart had a hole in it, a ventricular septal defect (VSD).

Ivy is my second baby. I already had a toddler at home, and suddenly I had two under two. When she was diagnosed following her routine six week GP check, after they heard a loud systolic murmur, my mind went straight to self blame.

I remember thinking: What did I miss? How could I not know something was wrong with my baby’s little heart? I am a midwife myself. I should have spotted something, should I not? I replayed every moment in my head. Had I been too busy with a toddler? Too tired? Too distracted to notice?

The only signs I had really seen were very subtle. A couple of times Ivy felt sweaty but I assumed I had simply overheated her in the car seat with blankets and a hat. Her breathing was on the faster side, but it always had been, so I thought this must have just been her. Otherwise she seemed like a normal newborn.

Our cardiologist was so kind and reassuring. They explained that with many VSDs, symptoms often do not show in the first few weeks of life. From that point on, our world became appointments, echocardiograms, feeding struggles and learning the language of cardiology. Ivy tired easily and struggled to gain weight despite breastfeeding and top ups. I spent hours watching her breathe, counting feeds and nappies, loving her fiercely and fearfully at the same time.

When we were told Ivy would need open heart surgery, my own heart broke and strengthened all at once. How do you hand your baby over for something so enormous and trust that others will fix what nature got wrong?

The day of her surgery was the longest day of my life. We handed our tiny baby over and then waited. Four and a half hours felt like a lifetime. 

Ivy amazed us all. She did so well that she was extubated in recovery, so we never saw her ventilated. She spent less than twenty four hours in the PICU before moving to the ward, where she continued to recover beautifully. Six days after surgery, we brought her home.

One of the biggest things, looking back, was her colour. We had become so used to seeing a pale version of Ivy that I did not realise how unwell she had looked. After surgery, she suddenly looked well. Pink. Warm. Bright. It was like meeting a whole new version of my baby, the one she had always been meant to be.

Now, at five months old, Ivy is smiling, growing and showing us just how strong a little heart can be. She has been through more in her short life than some people go through in a lifetime, and she has done it with a quiet strength that takes my breath away.

Ivy’s heart needed repairing. People tell you babies are resilient, but when you truly see it in your own child, it changes everything.

We are so grateful to Tiny Tickers for the support, resources and hope they provide to families like ours. Knowing that other parents, medical professionals and charities are raising awareness and helping families navigate this journey makes the hardest days feel a little lighter.

Thank you for being there for Ivy, and for all the heart warriors out there."

Links:

• Ivy's Story
• Read more stories

With the festive season in full swing, I wanted to take a moment, on behalf of everyone at Tiny Tickers and, very personally, as a dad, to say the most heartfelt thank you for your generous support this year.

When my daughter Zoe was diagnosed at her 20-week scan, the words were simple but devastating: “I think your baby has a poorly heart.” That moment changed the course of our lives. Zoe was born just before Christmas, and while most families were preparing stockings and wrapping gifts, we were hanging tinsel on a plastic cot, placing a tiny Santa toy at her bedside, and trying our best to create a little bit of Christmas magic on a ward filled with machines, monitors and fear.

There are things you never forget: the cold walk home on Christmas Eve to an undecorated house; the half bottle of Prosecco sipped from plastic cups on the ward on Christmas morning; the choir singing softly between beeping monitors; the moment a nurse pulls you aside because something isn’t right; and the New Year’s Eve spent on a hospital floor, terrified of what the next year might bring.

We were lucky. Zoe had life-saving open-heart surgery in early January. Thanks to extraordinary NHS care, early detection, and the work of charities like Tiny Tickers, she is now a thriving, joyful teenager. But that first Christmas will always stay with me, and I know that right now, many parents are living their own version of that story.

Your support this year means that those families aren’t facing it alone. You have helped us train sonographers, equip health professionals with vital knowledge, and support parents at the most fragile moments of their lives. Because of your generosity, what once felt impossible is now becoming possible for so many more babies.

This Christmas I find myself reflecting less on what we’ve been through, and far more on what the future holds, not just for Zoe, but for every child we have the privilege to reach. Your contribution helps write stories of survival, growth and possibility.

Thank you for believing in our work, for standing with us, and for helping us reach more families who desperately need it. From everyone here at Tiny Tickers, and from me and Zoe, warmest wishes for a happy holiday and a hopeful New Year.

With gratitude,

Jon Arnold
Chief Executive, Tiny Tickers
Dad to Zoe,  heart warrior, and reminder every day what your support means