There’s no way to prepare for the moment when you’re told that something is wrong with your baby’s heart. For Ivy’s mother, Emma, that moment came after her routine six-week check-up, and it changed everything for her family. This is their story.
Ivy is my second baby. I had a toddler at home, and suddenly, I found myself with two little ones under two. Pregnancy had been normal. Ivy’s scans were all reassuring, and we carried her with the usual excitement that comes with waiting for the arrival of your daughter. Little did we know that Ivy’s heart had a hole in it — a ventricular septal defect (VSD), which, I have since learned, isn’t always detectable during pregnancy ultrasounds.
In hindsight, I sometimes think about how different things might have been if we had known. Would I have been able to enjoy those months of pregnancy as much? Would I have spent the whole time worrying about my baby’s health instead of marveling at the wonder of pregnancy? Perhaps in some strange way, it was for the best that we didn’t know until after she was born, even though the diagnosis came as a massive shock to us.
After her birth, things seemed to go smoothly at first. But at six weeks, during her routine check-up, everything changed. The GP detected a loud systolic murmur, and suddenly our world was turned upside down. The doctor’s words were a blur, but one thing stood clear: Ivy had a VSD, a hole in her heart that needed further investigation.
I was devastated. My mind spiraled into self-blame. I’m a midwife, after all. How could I not have noticed something was wrong with my baby? I replayed every moment in my head. Had I missed something? Was I too busy with my toddler? Too tired? Too distracted to notice the subtle signs? It was a question I couldn’t stop asking myself.
Looking back, I realize the signs were so subtle. There were a couple of times when Ivy felt a little sweaty, but I just assumed it was because I had overheated her in the car seat, with blankets and a hat. She was breathing a bit faster than usual, but I thought that was just how she was. Otherwise, she seemed like a normal newborn.
Our cardiologist was kind and reassuring. They explained that many VSDs don’t show symptoms in the first few weeks of life. It is only around six weeks, when the pressures in the heart and lungs change naturally, that babies begin to show signs. There was nothing I had missed, nothing I could have known at the time.
From that moment on, our world became appointments, echocardiograms, feeding struggles, and learning the language of cardiology. Ivy’s body was working so hard just to keep up. She was tired easily, and though we were breastfeeding and supplementing, she struggled to gain weight. I spent hours just watching her breathe, counting her feeds and nappies, loving her fiercely, but always with a sense of fear in the pit of my stomach. I felt so protective, but I was also so helpless.
Then, the day came when we were told Ivy would need open-heart surgery. My heart shattered, but at the same time, it was oddly strengthened. How do you hand your baby over for something so enormous, so invasive, and trust that others can fix what nature had got wrong?
The day of her surgery was the longest day of my life. We handed our tiny baby over, and then we waited. The hours seemed endless. Four and a half hours felt like a lifetime.
But Ivy amazed us all. She did so well that she was extubated in recovery, so we never saw her on a ventilator. She spent less than 24 hours in the PICU before being moved to the ward, where she continued to recover beautifully. Just six days after surgery, we brought her home.
One of the most striking things about her recovery was the difference in her appearance. We had become so accustomed to seeing a pale, fragile version of Ivy that I hadn’t realized just how unwell she had looked. After the surgery, she looked different—healthier, warmer, pinker. It was like meeting a completely new version of my baby. It was the baby she had always been meant to be.
Now, at five months old, Ivy is smiling, growing, and showing us the incredible strength of a tiny heart. She has been through so much in her short life, more than some people experience in a lifetime, and she has done it all with a quiet strength that takes my breath away.
To any parent just beginning their heart journey, especially those who carry guilt or wonder what they might have missed, please know this: These things can be invisible until they are not. It is not your fault. You are doing the best you can, and that’s all anyone can ask for.
Ivy’s heart needed repairing. It wasn’t something I could have caught before. People always tell you that babies are resilient, but when you see it firsthand in your own child, it changes everything. Ivy showed me that resilience in its purest form.
We are incredibly grateful to Tiny Tickers for their support. The resources, the hope, and the awareness they provide make such a difference. Knowing that there are other parents, medical professionals, and charities all working to raise awareness and help families through this journey makes the hardest days feel just a little bit lighter. Thank you to Tiny Tickers for being there for Ivy and for all the heart warriors out there.