Ivy’s heart condition was not discovered until her six week check, a moment that changed everything for her family. Her mum, Emma, shares their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
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), which I understand cannot always be seen on ultrasound scans.
Looking back, I sometimes think that if I had known during pregnancy, I might not have enjoyed it in the same way. I would have lived those months with worry instead of wonder. So although the diagnosis came as a huge shock after she was born, perhaps, in some strange way, it was for the best.
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. It is only after around six weeks, when the pressures in the heart and lungs naturally change, that babies start to show signs. There was nothing I had missed. Nothing I could have known.
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.
To any parent at the start of their heart journey, especially those who carry guilt or wonder what they missed, please know this: these things can be invisible until they are not.
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.
Find out how you can spot the signs of congenital heart disease (CHD) with our Think HEART campaign.
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