Ivy’s heart condition, transposition of the great arteries (TGA), was detected during the 20-week scan. Her mum, Holly, shares her inspiring story:
My husband Mark and I found out that our first baby, a baby girl, had a heart condition at our 20-week scan. The wonderful sonographer had taken a long time trying to find one particular view of the baby’s heart. He went off to get a second opinion, and then a third opinion. As they all stood there speaking in a medical language I didn’t understand (but feel fluent in now, six years down the line), we could tell they had seen something they shouldn’t have. Within a few hours, we had seen a cardiac specialist and were leaving the hospital with leaflets, anatomical drawings and a diagnosis of transposition of the great arteries (TGA).
It’s hard to put into words the devastation we felt in those early days, but that devastation turned into gratitude that it had been picked up so early, and a drive to make this our ‘new normal’ and do everything we could to still enjoy the pregnancy. Thanks to the early detection, we were able to prepare ourselves and our families for what was to come. We were able to make informed decisions and come to terms with what our first hours, days and weeks of parenthood may look like. We threw ourselves into fundraising as a distraction and raised over £5,000 for heart charities.
Our beautiful baby girl, Ivy, was born in August 2017. She wasn’t well enough for a cuddle and went straight down to the Neonatal Intensive Care Unit (NICU) where she had a balloon septostomy procedure shortly after birth. Mark and I were able to have our first cuddles with her when she was three days old and had stabilised a bit. She then went down for her open heart surgery at nine days old. I remember feeling an immense sense of relief on that day. I knew that she was where she needed to be and was in the best hands. What one of the wonderful surgeons at the hospital said to me whilst we were signing the consent forms will stay with me forever. He listed the risks of the surgery which all sounded so scary, but when he went to the section of the form that asked for the benefits, he wrote simply ‘Ivy’s condition is not compatible with life’. That was all I needed to know.
Ivy’s surgery went very well, she was out in eight hours and they had even been able to close her chest. She came on leaps and bounds over the next few days and seven days post surgery we were able to take her home. From the very first day we were home, we threw ourselves into giving her the fullest and most magical life we possibly could. In her first few days we took her to the beach and for long walks in the countryside.
Ivy is our little miracle and has done so so well over the past six years. She still has annual check ups, and there are a few things we need to keep an eye on, a leaky valve and slight narrowing of the arteries, but all in all she’s doing incredibly well. She doesn’t need to take any medication and you’d never know she had ever been so poorly. We make sure she knows her story and how special she is. Ivy is so proud of her special scar, but we will never let it define who she is, she is so much more than what happened to her as a baby. She is very active and loves gymnastics, swimming, cycling and yoga. She’s also incredibly creative. Ivy loves to read, and is so dramatic, I am sure a life in showbiz is on the cards for her (although she has her heart set on being an artist).
I am eternally grateful to all of the doctors, nurses, sonographers, heart charities and other parents who have helped us all on this journey. One of the most important things to me now is helping other parents in a similar situation, and I have made some friends for life in other heart mummies. Ivy’s story even inspired me to change my career from working in financial services, to working for the NHS. I now help to put new state of the art IT systems into the very same hospitals that saved Ivy’s life, and it’s the most wonderful, fulfilling job I could ever imagine.