When Ettie was seven days old, she was diagnosed with two heart defects, ASD and VSD. Her mum Beth shares their story in the hope that it brings comfort and reassurance to other families starting their own heart journey:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
When we attended our ten week booking appointment, we shared our family history, including the strong line of heart conditions on my partner’s side. Because neither of us had been diagnosed ourselves, we were reassured that it was not a concern and my pregnancy was classed as low risk.
All of Ettie’s antenatal scans appeared normal. Apart from measuring slightly small later in pregnancy, there were no signs of any heart issues. We expected to welcome a healthy baby girl.
Ettie arrived in November 2024, weighing 5lb 6oz, tiny, perfect and utterly beautiful. A heart murmur was heard during her newborn check, but we were told this could be normal in the first day or so. The following day we were reassured that the murmur had disappeared, and we were advised to “go home and enjoy your baby”. We felt such relief.
Just seven days later everything changed.
I took Ettie to be checked after she developed severe oral thrush and a sticky eye. Because she was so young, the doctors carried out a full assessment and the murmur was immediately detected again. Her breathing was faster than normal, and within moments she was being treated for possible sepsis. Our tiny baby was suddenly surrounded by machines and undergoing urgent tests.
An echocardiogram revealed two congenital heart defects: an ASD and a VSD. We were devastated, terrified and completely unprepared. Thankfully, infection markers were clear, but from that day forward our lives became intertwined with cardiology.
We were referred to the specialist team at the Royal Brompton Hospital. Although Ettie had few symptoms, her scans confirmed a large ASD and a smaller VSD. She began diuretics and was closely monitored over the following months. While her ASD began to improve, the VSD remained unchanged and eventually began causing mild valve regurgitation. At eight months old, the decision was made for Ettie to undergo open heart surgery.
Handing her over to the surgical team was the most heartbreaking moment of our lives, something that is etched into our brains forever.
But Ettie showed extraordinary strength. She was extubated in recovery and spent less than 24 hours in the PICU before transferring to the ward.
Even after catching a viral infection, she was discharged just five days after surgery. Her resilience was incredible.
Today Ettie is thriving. She is full of energy, full of personality and full of life. Although she will always be a cardiac patient and require ongoing monitoring, she is doing amazingly well.
Congenital heart disease can feel overwhelming, isolating and terrifying for families, especially in those early days. But there is hope. There is progress. And our heart babies show us every day just how strong they truly are.
If I could go back to the very beginning, I wish I had pushed harder for our family history to be taken seriously, because I truly believe that if it had been, some of the trauma we went through as first time parents and what our daughter had to endure could have been reduced.
To any family at the beginning of their heart journey, you are not alone. Celebrate every small victory, take each day at your own pace and be gentle with yourselves. There is light at the end of the tunnel.
We will forever be grateful for the support we received from Tiny Tickers. The booklet they sent to our door gave us an insight into what to expect, explained in a way that was not full of complex medical terms, helping us feel that little bit more at ease. The stories they share from other families going through the same thing brought us so much comfort while we were waiting to face it ourselves.
It is incredible that they also provide extra training to sonographers so that mistakes like these can be picked up earlier in the future. From the bottom of our hearts, thank you.
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