Felicity and Florence: Two sisters with "special hearts"

When Louise went to her routine 20-week scan, she was told that her unborn baby, Felicity, had coarctation of the aorta, a condition where the main artery pumping blood from her heart was too narrow. Now, seven years later, Felicity has a three-month baby sister, Florence, who also has a heart condition. Louise shares her story:“As soon as I arrived at Great Ormond Street Hospital (GOSH), I had an ultrasound to measure Felicity’s artery and compare it to the standard size of an aorta for a baby at 20 weeks.

“Within two days of giving birth, Felicity was transported to GOSH and having open-heart surgery. Naturally, I felt overwhelmed, but hospital staff kept me reassured and made sure we had everything we needed, even somewhere to stay.

“Initially, we didn’t know that GOSH Charity provided accommodation for families. I was terrified of how we were going to afford staying in London, but the hospital arranged for us stay in the flats directly across the street from the front entrance. We had our own room with a television and a bathroom, and there were shared facilities for doing laundry. We didn’t have to pay anything, which took away a lot of stress. I could focus on being calm and visit Felicity whenever I wanted. GOSH Charity gave me the opportunity to be near her.

“While it was a sad time for us because we were worried about Felicity, it was also a nice experience. We felt well looked after. Going into a high-dependency unit is a very overwhelming experience, but staff were always so calm and caring, and it made a real difference. We mostly just stayed by Felicity’s bedside, but we knew there was always someone we could speak to if we were feeling overwhelmed.”

“Unfortunately, the Felicity’s open-heart surgery didn’t work. When she was six months old, she had to have a second operation where a tiny balloon was inserted into an artery in her groin and pushed all the way up to the narrowing in her aorta. Her surgeon then floated air up into the balloon to burst and breakdown the surrounding blood vessels, which opened her aorta. Fortunately, that operation worked, and surprisingly it was only a day procedure.

“I can say quite simply that if Felicity didn’t have this operation, she wouldn’t have survived. Her heart was pumping blood, but such a small amount was travelling to the rest of her body. Naturally, I worried throughout her recovery, but she quickly went from monthly check-ups to seeing her consultant every two years. And besides pain relief immediately after her operation, Felicity hasn’t had to take any medication."

“Seven years have passed and Felicity has gained a baby sister, Florence, who is now three months old. Unfortunately, Florence also has a heart condition, called Tetralogy of Fallot. This is a rare condition caused by defects which cause oxygen-poor blood to flow out of the heart and to the rest of the body. Having two children with heart conditions can be difficult and concerning, however, know that Florence is receiving care under GOSH gives me hope. I know we are in safe hands!

“Felicity takes everything in her stride. She’s a wonderful sister to Florence and although she doesn’t have any memory of being at GOSH, she has a fairly big scar on her chest, which she calls her ‘special heart’.  Felicity thinks the world of Florence, saying 'we have something in common, mummy – our special hearts.' She is extra protective and helpful.

“Felicity is currently doing very well at school. She’s very enthusiastic and sporty, which I encourage to help her keep as healthy. She has these big dreams of becoming an Olympic gymnast and I believe she can do anything she wants.

“Even though Felicity had a difficult start as a baby, you wouldn’t know that there was anything wrong with her. People are shocked when I tell them she had a traumatic first few months of life. She’s is just a normal eight-year-old girl, which is what any mum in our situation wants to hear when they have a poorly child.

“When we first arrived at GOSH, I was honestly in awe of the place. The first thing I thought of was how can a hospital offer so much to families like mine from all over the world, and then I began to learn about how they receive an incredible amount of funding from charity. That’s why Florence, Felicity and I took part in a year of fundraising events, including the RBC Race for the Kids. We wanted to do what we could to raise money for GOSH and support other children like Felicity. So far, the girls have raised over £3,000 in one year for GOSH.”