Alder Hey patient Orla wins British Heart Foundation Award!
Meet 8 month old Orla from Lancaster. At just one week old, Orla was diagnosed with a heart condition called Double outlet right ventricle (fallot type), which is associated with other heart defects. This is where both the aorta and the pulmonary artery are connected to the right ventricle instead of the left ventricle. In simple terms, the right side of the heart has to do the work of both sides, which can lead to mixed blood flow and problems in delivering oxygen-rich blood to the body.
When Orla was born in her local hospital, medics detected a heart murmur. Orla’s parents, Alice and Adam, bought their own monitor which checked her heart rate and oxygen levels over night when at home for peace of mind. One night, her levels were alarmingly low and Orla’s parents rushed her to their local A&E. By the time she arrived, Orla had gone purple and her oxygen saturation continued to plummet.
Orla was transferred to Manchester hospital where she was diagnosed with Double outlet right ventricle. Orla needed surgery to correct the heart’s structure.
Orla was transferred to Alder Hey where she underwent open heart surgery to fit a shunt, a small tube which helps blood flow in the right direction. The operation took a nerve wracking four hours and then Orla stayed in intensive care for nine days before being transferred to the cardiac ward.
Orla was in hospital for a total of 17 days and thanks to a remote collaboration platform called Little Hearts at Home, Orla was discharged home in May 2024.
Cardiologist Dr Phuoc Duong, who helped develop LHAH explains “Patients with heart defects, would in the past, be expected to spend some time in hospital, undergoing surgeries and tests. However, thanks to the platform, we can safely monitor little hearts like Orla’s, at home. A community nurse will regularly see these families and instantly feedback their stats including weight, oxygen levels, and feeding concerns etc to the cardiac team at Alder Hey and if there’s any concern, we can address it straight away.”
Following her discharge from Alder Hey Children’s Hospital, Orla was thriving on breast milk. However, the Little Hearts at Home digital platform detected that Orla’s weight gain was falling dangerously below the growth chart, a critical concern for children with cardiac conditions. Thankfully the platform’s alert meant that Orla received immediate intervention by a specialist dietitian. Advanced Specialist Dietitian Karen was able to review via the platform, avoiding delays from a traditional GP referral. Karen coordinated with the community nursing team, who recorded weekly weight measurements and plotted them against growth charts. This data provided a clear picture of Orla’s nutritional needs, facilitating virtual consultations rather than frequent hospital visits.
With expert guidance, Orla’s milk was adjusted to meet her unique requirements, leading to significant improvements in her growth. Steady weight gain is vital for infants with complex heart conditions, especially to get them ready for life-saving surgeries.
Orla’s mum Alice said the platform had given her and her family peace of mind. Alice said “The platform is amazing. At one point, Orla stopped gaining weight and this was picked up straight away and she was referred to a dietitian and is back to normal. It helps keep us out of hospital but with the reassurance that we have the support of the amazing cardiac team at all times.”
In September 2025, Orla, Alice and Adam were invited down to London to attend to the British Heart Foundation Heart Heros Awards. At the ceremony, which was held at the Paradox Museum in London and hosted by CBBC’s ‘Operation Ouch’ The O Twins, young children from across the UK were celebrated for their bravery, their spirit, and the inspiration they provide to others. We’re so proud to say that Orla won – well done Orla, you are an inspiration to us all!
Orla will need more surgery in the future, but thanks to Little Hearts at Home, hopefully she can spend as little time as possible in hospital.
Alder Hey Children’s Charity is very proud to have part-funded Little Hearts at Home, continuing our close relationship with the Research and Innovation team at Alder Hey. The platform is making an incredible different to young patients and their families. As of October 2024, Little Hearts at Home is supporting 44 patients, facilitating an average of 35 home visits and 16 healthcare notifications per week. Since it began, Little Hearts at Home has helped 96 families manage their loved one’s care from home, with 320 community nurses trained to provide exceptional support.
