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Whilst having cardiovascular issues takes a physical toll on our Heart Heroes, it can also take an emotional one on both them and their parents. Having our Heart Community has helped charity ambassador and Heart Dad, Oli Coles, to talk openly about how his experiences and difficulties as a Heart Parent.
Sophie's Story
We found out early on in pregnancy that there was an issue with Sophie as they found a thickening on the back of her neck. We were sent to St Michaels in Bristol for more in-depth scans which is where we first found out that Sophie had a condition called tetraology of fallot. We had regular scans and Sophie was born via c section at 37+2 weeks. We were told she would require open heart surgery at some point. Firstly Sophie required a stent to be fitted in which they went in via her groin it worked really well for months but unfortunately she required a further stent to be fitted as she out grew the first one and started to spell again. This helped her to grow ready for her full repair at 18 months old. On the 17th August 2018 we had our normal Friday weight and SATS check by our community nurse and Sophie’s SATS were normal for her so she told us to go to Musgrove where we had open access to get her checked over. Little did we know that later that day we would be whisked to Bristol Children’s Hospital by the watch team. Bristol managed to stabilise Sophie overnight but on the Saturday she kept dropping her SATS and it was decided that she needed her repair. All the team needed was called in and Sophie was taken for her operation at 10pm we had a long wait in the parent’s room and Sophie finally came out at 4am on Sunday morning. My first thought on seeing Sophie apart from relief that she was ok was I truly didn’t realise how blue she was before her repair. Sophie is now 3 years old and full of energy and life. She loves the outdoors and getting crafty.
Leo's Story
Leo was diagnosed with a single hole in his heart at our 20 week scan. We were told that this would not need surgery or any intervention but that he would be monitored through pregnancy just in case. Nothing else was picked up. When he was 2 days old, his feet were still blue-ish and I could just sense something wasn’t right. Mothers instinct. I pushed for a echo as I just knew something wasn’t right. After the scan Leo was taken to intensive care, and we were told that Leo had 4 complex heart conditions and needed open heart surgery to save his life. He was transferred from St Michael’s to Bristol children’s hospital when he was 6 days old and had his first open heart surgery the next day; on his due date. Massimo Caputo was his surgeon, and we could never begin to thank him enough for saving Leo’s life. Leo kept getting infections in his wound which required further surgeries, and a 2 month stay in hospital. We were finally allowed home with a picc line and nurses once a day. Our son is now 2 and is the craziest, loudest, most amazing little boy. We’re also considering making him a big brother soon - something which I never thought would be possible, because of our journey with Leo.
Sophie's Story
We found out early on in pregnancy that there was an issue with Sophie as they found a thickening on the back of her neck. We were sent to St Michaels in Bristol for more in-depth scans which is where we first found out that Sophie had a condition called tetraology of fallot. We had regular scans and Sophie was born via c section at 37+2 weeks. We were told she would require open heart surgery at some point. Firstly Sophie required a stent to be fitted in which they went in via her groin it worked really well for months but unfortunately she required a further stent to be fitted as she out grew the first one and started to spell again. This helped her to grow ready for her full repair at 18 months old. On the 17th August 2018 we had our normal Friday weight and SATS check by our community nurse and Sophie’s SATS were normal for her so she told us to go to Musgrove where we had open access to get her checked over. Little did we know that later that day we would be whisked to Bristol Children’s Hospital by the watch team. Bristol managed to stabilise Sophie overnight but on the Saturday she kept dropping her SATS and it was decided that she needed her repair. All the team needed was called in and Sophie was taken for her operation at 10pm we had a long wait in the parent’s room and Sophie finally came out at 4am on Sunday morning. My first thought on seeing Sophie apart from relief that she was ok was I truly didn’t realise how blue she was before her repair. Sophie is now 3 years old and full of energy and life. She loves the outdoors and getting crafty.
Leo's Story
Leo was diagnosed with a single hole in his heart at our 20 week scan. We were told that this would not need surgery or any intervention but that he would be monitored through pregnancy just in case. Nothing else was picked up. When he was 2 days old, his feet were still blue-ish and I could just sense something wasn’t right. Mothers instinct. I pushed for a echo as I just knew something wasn’t right. After the scan Leo was taken to intensive care, and we were told that Leo had 4 complex heart conditions and needed open heart surgery to save his life. He was transferred from St Michael’s to Bristol children’s hospital when he was 6 days old and had his first open heart surgery the next day; on his due date. Massimo Caputo was his surgeon, and we could never begin to thank him enough for saving Leo’s life. Leo kept getting infections in his wound which required further surgeries, and a 2 month stay in hospital. We were finally allowed home with a picc line and nurses once a day. Our son is now 2 and is the craziest, loudest, most amazing little boy. We’re also considering making him a big brother soon - something which I never thought would be possible, because of our journey with Leo.
“Real superheroes live in the hearts of children fighting big battles”
Heart Warming Stories of Hope
Two volumes of personal accounts written by our Heart Families and available to buy from our shop.
Every penny we receive helps a child and their family create ever lasting memories. The money you donate helps us to fund support groups, activities, experiences and events, allowing them to spend quality time together. We are truly grateful for all donations received as we do not receive any statutory funding.