Piper’s heart defects were detected when she was six weeks old. Her mum, Gemma, shares their story:
When Piper was born via planned c-section, we were sent home 24 hours later with no complications… Or so we thought.
As the weeks went on, we noticed some issues with her breathing. I spent days Googling her symptoms, to the point I knew something wasn’t right. She would bob her head, had a tracheal pull, would retract between her ribs and had episodes where she really struggled to breathe when feeding, which meant failing to gain weight. As I was breastfeeding, I blamed myself… Maybe I wasn’t doing it right? It completely changed my feelings towards breastfeeding my baby.
I raised these concerns at her six-week check and we were sent straight to hospital for tests and checks. We spent over seven hours there, getting x-rays, viral swabs etc. Something wasn’t sitting right with the nurse, so in a stab in the dark, she contacted cardiology for an ECHO scan of Piper’s heart.
When the cardiologist came back, he presented his findings to us. The next sentence made my world stop spinning: ‘Piper has three holes in her heart – one will require surgery.’ This is the last thing you expect to hear about your baby, and it took me a while to register what was said.
Piper was diagnosed with a large VSD (a hole in the wall that separates the two lower chambers of the heart), an ASD (a hole in the wall that separates the upper chambers of the heart) and patent ductus arteriosus (PDA). These were all gibberish to me and sent me down another rabbit hole of searching. How could this be missed?
After Piper’s diagnosis, her symptoms grew worse. There were a couple of trips to the hospital when her oxygen dropped, but by the time we got there it was back to normal. At times we felt silly trying to explain what was going on, but they again sent us home. These episodes became more frequent, until one day, she went blue. Her oxygen had dropped drastically and I had to call an ambulance. That day, we were admitted to hospital.
We spent ten days in a ward before her surgery, which had been brought forward due to her symptoms being so bad. On the lead up to her surgery, we had many nights where her symptoms were really bad, with blue episodes and oxygen levels dropping very low. The nurses reassured us everyday and helped us through the most worrying time of our lives. We had been dealing with this at home and, without them raising their concerns, her surgery might not have been so soon.
The day of Piper’s surgery arrived and I cant really explain the feeling. You know you have to hand your baby over, you know what’s going to happen to her. I had tried to prepare myself for how she would look after surgery by looking at pictures and videos .. which probably was a terrible idea, looking back. I didn’t want to be scared of my baby.
The surgery took around five hours and, to our relief, they repaired all three defects while they were in there. If I could give any advice for during surgery, if it’s possible, leave the hospital. Get away from that environment. Try to keep busy, or you will overthink everything.
After surgery we spent seven days in PICU, where we had a few wobbles with her heart rhythm being all over the place and digestive system playing up. It was hard to watch her there. She would try to wake up, and panicked because of the ventilator. The stress of her being upset caused her heart rhythm to go crazy, which meant they had to keep her sedated until they sorted that out.
Each day we would talk to her, hoping she would recognise our voices. We had been sleeping with the bonding squares we received from Tiny Tickers beforehand and they stayed by her side throughout her stay.
Eventually we got back to a ward. Our recovery there gave us that little bit of independence with our daughter again, alongside the support of the nurses there. We could never have done it without them. They saved us and our daughter – I can not speak more highly of the staff looking after us.
Piper looked like a new baby after surgery. Each day wires were removed, until we had a completely unplugged baby who we could pick up and cuddle. Even her colour had changed, she was so pink. Before she had been pale, but I assumed that was because she was redheaded like me. Our little girl was able to become the bright and happy little girl she was always destined to be.
If this wasn’t detected when it was, it could have been fatal for Piper. I will forever hope that more checks are done for babies before leaving hospital. What Tiny Tickers is doing for babies is amazing. Every baby deserves the best start in life. It took us six weeks to get a diagnosis, which could have been six weeks too late.
Here’s to a happy and healthy life for our, now mended, baby girl.