Francis’ Story

Francis’ heart condition was detected soon after his birth. He suddenly and tragically passed away when he was six months old. Here is his story, told by his mum, Abby:

Our eldest son, Francis was born in June 2019 after a seemingly healthy pregnancy. He seemed so happy and healthy, at a chunky 8lbs 10oz and with beautiful dark hair and blue eyes.

However, during his newborn checks, a heart murmur was picked up. We were told this wasn’t unusual in a newborn, however due to there already being heart conditions in the family, we asked if he could be referred for a scan to check things over.

At nine days old, Francis had his first echo and we found out that he had a VSD (hole in the heart). We were told that our precious baby would go into heart failure within six weeks and require open heart surgery at three months. However, we were reassured that, with surgery, Francis would go on to live a normal, healthy life.

Although we expected Francis to become more poorly and go into heart failure, he continued to thrive. We later found out that he also had another piece of muscle that had grown in the wrong place within his heart (right ventricular outflow tract obstruction), and this was mitigating the impact of his VSD. The plan was that this would also be removed when he had his surgery. Three months came and went – as Francis was doing so well, the decision was made to push back his surgery.

Francis seemed so healthy all the way through his life, right up until he died. He had a sudden cardiac arrhythmia in the early hours of 17th December 2019. One minute he was having his milk from me as normal, and the next he died in my arms. The attempts by ourselves, the paramedics and the hospital staff to bring him back were unsuccessful and he tragically passed away at just six months old – one week before his first Christmas.

As a family we want to help make sure other families don’t have to experience the same loss we have. By fundraising, and now working for Tiny Tickers, I hope that the improvement of congenital heart disease (CHD) detection rates in babies will help to ensure that all babies with CHD are provided with the correct care and support.

Since 2019, we have arranged a number of fundraising events for Tiny Tickers, including making and selling knitted items for Heart Week, bake sales, a Christmas pulse oximetry fundraiser, a sponsored obstacle course for Francis’ cousins and most recently making and selling 125 bookmarks for The 125 Challenge. We have received so much support from Tiny Tickers and have been made to feel like our donations have made a real difference to families with a CHD diagnosis.

We were blessed with Francis for a wonderful six months and one week, and we hope that in the work we do in his name we are able to share some of the light and joy he brought and still brings to our lives.