Jessica's story | Action Medical Research

Jessica's story

Hypoplastic Left Heart Syndrome (HLHS)

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 has a heart problem called hypoplastic left heart syndrome (HLHS) which affects one baby in 5,0001. The left side of her heart is much smaller than usual, and cannot 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.

But thankfully Jessica is now, her mum says proudly, a ‘happy, smiley five-year-old’ who loves drawing, dressing up and playing house. Jessica needs an especially watchful eye, however, since she can become breathless, tires more easily than other children and can turn blue if she gets cold. She takes medicine four times a day, has regular check-ups and will need further surgery to make the right side of her heart stronger.

Researchers like Dr Pablo Lamata are working to bring hope to families affected by HLHS. You can read Louise's moving account of what it's like to discover your child has a serious heart condition, and an update on life as a heart family.

The blog Little Hearts, Big Love is available here.


1. Khairy P et al. Univentricular heart. Circulation. 2007; 115(6): 800-12.


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