The news that their first baby, Jessica, had a rare, potentially fatal heart condition came as a complete shock to parents Louise and Michael. “It was discovered when I had a routine scan 20 weeks into my pregnancy,” says mum Louise. “We were told that our baby was unlikely to survive.”
Jessica had a heart problem called hypoplastic left heart syndrome (HLHS) which affects one baby in 5,0001. The left side of her heart was much smaller than usual, and could not pump enough blood to the body.
Jessica survived life-saving surgery when she was still in the womb and her first open heart surgery took place within hours of her birth: “I had one quick cuddle after she was born, and then they took her down to theatre,” Louise remembers. “We were filled with euphoria that she’d arrived and was well, but also terrified.”
After further surgery at one week old, little Jessica stayed in hospital for a month. Further operations took place at 14 weeks old and six months. Each time, baby Jessica’s recovery was fraught with worry. She suffered wound infections and other complications, had to be tube fed, and needed many different medicines.
Jessica endured further operations in her early years, and needed daily medication, but was, her mum says proudly, a ‘happy, smiley’ little girl who loved drawing, dressing up and playing house, thrived at school and was a wonderful big sister to Sophie, who was born with no heart problems.
Tragically, Jessica lost her life in April 2018 aged just six years old. Her heartbroken parents remain dedicated supporters of work to help other children with heart disease and Louise says: "It means a lot to know that Jessica's story is able to help others and that by sharing it, it is also helping to keep her memory alive. She was such an amazing little girl and I am so proud that I was (and still am) her mummy."
Researchers like Dr Pablo Lamata are working to bring hope to families affected by HLHS.
Louise's blog Little Hearts, Big Love, which also reflects on child loss, is available here.
1. Khairy P et al. Univentricular heart. Circulation. 2007; 115(6): 800-12.
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