Supporting patients and families

Home monitoring for babies with heart conditions

Above: mum Rachel Davy with her husband and children Sam and Emmie.Sam, left, was treated at Evelina London for his heart condition

Evelina London has launched the first trial of a new home monitoring programme for babies with serious heart conditions. Partially funded by donors, it will benefit babies born with hypoplastic left heart syndrome (HLHS) who will need three operations during the early years of their life.

The hospital designed this innovative programme so parents can monitor their baby’s vital signs between operations, increasing their child’s odds of surviving.

Evelina London is a specialist centre for treating hypoplastic left heart syndrome, which is a type of serious congenital heart disease that occurs when blood cannot flow normally through the left side of the heart. This is because the baby’s heart 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 of their heart 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 new technique called a hybrid procedure. In a hybrid procedure, there are three components: the interventional cardiologist inserts a stent to keep the duct open and supply blood to the body, they then enlarge the normal hole between the atriums to ensure good mixing of blood and the surgeon ties a small synthetic band on each lung artery to control blood flow to the lungs. 

This combined ‘hybrid’ approach saves babies from having open heart surgery just after they have been born.

This procedure improves the babies' circulation while allowing them to grow before having major surgery. This means that doctors are able to see how the heart is developing so that they can make a more informed choice at the next stage of treatment.

The home monitoring programme

Because this heart condition is so serious, children suffering from HLHS sometimes die between the first and second stages of the surgical programme or after having hybrid procedure. So Evelina London has launched a pilot programme that allows parents to monitor their baby daily when they take them home, meaning they can alert the hospital as soon as they notice any abnormal changes.

‘For babies with HLHS, we know that there is up to a 10% risk that they will die between operations without warning,’ says Dr Owen Miller, a consultant in paediatric cardiology at Evelina London. ‘It has been shown elsewhere that if you do simple monitoring, you can reduce the mortality towards zero.’

Parents will be given all the equipment they need to monitor their baby’s weight, oxygen saturation levels, heart rate and fluid intake which they can then record daily in special diaries.  The outreach team and ward nurses will train parents how to use the equipment and diaries before they take their baby home.

‘We’re going to have a dedicated phone line number just for babies on this programme that is going to be manned by the outreach team,’ says cardiology clinical nurse specialist Sherrida Rollings. ‘So parents can call this line if they notice anything about the baby – if there’s anything unusual going on that they’re not happy about. Even slight variations can increase the baby’s vulnerability.’

Rachel’s story

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.

‘We spent nearly six weeks in three different hospitals, all in which Sam was closely and continuously monitored,’ she says, ‘So by the time we were allowed to go home we were overwhelmed with emotion, we were both elated, but then extremely nervous to be leaving this safe environment.’

Rachel and her husband were advised to look out for signs that Sam wasn’t himself, ‘but we barely knew him,’ she says. ‘He was five weeks old so we didn’t know what was ‘himself’ at that point.

‘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 and when Sam did make it to the second stage and he recovered very well, we felt like a huge weight had been lifted from our shoulders.’

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.

‘It would have given us more control, more understanding and that reassurance,’ she says. ‘As a parent I would rather have the security, the control and the understanding of my child’s condition than to be second guessing his medical state.

‘If this programme is proven to save lives and it alleviates the pressures that we feel as parents then it’s a programme that is so desperately needed and welcomed.’

 

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 make a donation today.