Five-month-old Sienna was born with complex heart conditions, including a condition which meant the left side of her heart was smaller than the other.
Despite these complications, Sienna did well at birth initially, needing no intervention and was able to go home to her family for the first time with plans for multiple heart procedures to come. Sienna would also be monitored by a remote monitoring solution developed by Alder Hey Children’s Innovation called ‘Little Hearts at Home’ (LHAH).
As part of the platform, community nurses will visit the families regularly at home and submit the babies’ vitals data such as saturation levels, weight, feeding volume and general physical health through the platform, the specialist cardiac team at Alder Hey will then have access to this data.
The platform integrates automatic alerts if a patient breaches their unique thresholds, set by the clinical team upon hospital discharge, allowing the team to determine if the child needs to come into the hospital or can be safely kept at home until their next procedure.
At 11 weeks old, Sienna fell ill, and it was acknowledged through the Little Hearts at Home platform that she would need to be seen. Sienna arrived at the hospital safely and spent a few days in critical care before being taken for emergency heart surgery, undergoing a BT shunt – a surgical procedure in which a small tube is used to increase blood flow to the lungs in some forms of congenital heart disease.
The surgery was a success and she then spent two weeks recovering on the intensive care unit, before being moved to ward 1C. During that time, she needed a balloon atrial septostomy – a procedure that will help your baby’s body get oxygen-rich blood. This led to Sienna spending a few days in the high-dependency unit, before being able to return to Ward 1C on Christmas Day evening.
Even after her first surgery, Sienna struggled with her oxygen levels and a CT scan revealed more heart problems, including the narrowing of the arch above the BT shunt tube. This meant that Sienna would require heart surgery yet again, this time undergoing a Glenn procedure, which is a heart operation for babies born with an issue that doesn’t allow normal blood flow through their heart.
The operation was once again successful, with Sienna spending three weeks on Ward 1C recovering before being able to go home for the first time in 11 and a half weeks.
Sienna now continues to be monitored by the Little Hearts at Home platform while the family await her third planned heart operation.
Kelly, Sienna’s mum, said: “The Little Hearts at Home platform was amazing because it had flagged up to Alder Hey that Sienna was having what they called ‘blue spells’ and would need to be seen.
“I like the app and seeing the community nurses at home, it’s reassuring that they’re in contact with Alder Hey on Sienna’s health and how she is coping at home.
“Alder Hey definitely saved my daughter’s life. As soon as she entered the hospital, I was at ease and knew she would get the treatment she needed to stay alive.”
Kelly, Sienna’s mum
“Sienna has been through so much these last 11 and half weeks, having two open heart surgeries, ballooning and a CT scan. Sienna is doing well at home and I’m proud of her, she is an amazing little girl! I do worry all the time but having community nurses coming to see her and being in regular contact with Alder Hey makes me feel more at ease.”
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