Partially funded by donors, our home monitoring programme helps babies born with hypoplastic left heart syndrome (HLHS) who will need three operations during the early years of their life.
This innovative programme allows parents to monitor their baby’s vital signs between operations, increasing their child’s odds of surviving.
Evelina London is a specialist centre for treating this syndrome, a type of serious congenital heart disease that occurs when blood cannot flow normally through the left side of the heart. This is because it has not developed properly in the womb, meaning the left ventricle (which pumps blood around the heart) is underdeveloped and the valves on the left side are very narrow or completely blocked.
The hybrid procedure
Babies can be treated for this condition with open heart surgery, but for babies who are too small or too ill to have this operation, they are treated using a technique called a hybrid procedure. This is less invasive than open heart surgery and saves babies from having major surgery just after they have been born.
The home monitoring programme
Because this condition is so serious, children suffering from HLHS sometimes die between the first and second stages of the surgical programme or after having the hybrid procedure.
But the home monitoring programme means that parents can monitor their baby daily when they take them home, and alert us as soon as they notice any abnormal changes.
Parents are given all the equipment they need to monitor their baby at home. Our outreach team and nurses train parents how to use the equipment before they take their baby home.
Rachel Davy’s son Sam, who is now two years old, was born with HLHS and had surgery at Evelina London when he was 13 days old. She strongly believes that the home monitoring programme would have been a real benefit to her and her husband, and to Sam.
"The first few months at home were extremely hard. We tried to stay positive and do our best to help Sam thrive, but in all honesty we were just living in hope and desperate to get to the next stage of surgery.
"All in all it was a very stressful and exhausting time for us as a family."
For Rachel, having the training and tools to monitor Sam at home would have made a real difference to her and her husband’s peace of mind.
Help us help more families
The home monitoring programme has been made possible by generous donations from people like you.
To help us to save the lives of more babies born with heart conditions, please visit the charity website to make a donation.