Posted on Wednesday 20 August 2014
Parents of babies who have had heart surgery will be taught simple medical knowledge in a bid to save lives.
Evelina London Children’s Hospital has launched the country’s first trial of a home-monitoring programme for babies with serious heart conditions.
Babies born with hypoplastic left heart syndrome – where blood cannot flow properly through the left side of the heart – need three operations in the early years of their lives.
Dr Owen Miller, consultant cardiologist at Evelina London, says: “Up to 10% of these babies sadly die without warning after the first operation because the condition is so serious.”
The home-monitoring programme teaches parents how to monitor their babies after they’ve been discharged from hospital, meaning they can alert the hospital as soon as they notice any abnormal changes.
Dr Miller says: “We discharge the babies when they have recovered and are well after surgery. However, their heart condition means they can become unstable and can sadly die without any warning.
“Educating parents and giving them simple equipment to measure their child’s vital signs means they can tell if something is wrong before it’s too late. We hope it will save lives.”
Parents are given equipment to monitor their baby’s weight, oxygen saturation levels, heart rate and fluid intake. They record these details every day in special diaries.
Nurses on the wards train parents how to use the equipment, and a team of nurses will visit the families in their homes when needed.
A dedicated phone line means parents can speak to a nurse at the hospital at any time if they are worried. Dr Miller adds: “Even slight variations can increase the baby’s vulnerability.”
Parents of two-year-old Sam Davy from Gleadless Townend in Sheffield believe that the programme would have made a real difference to their experiences after he had heart surgery at Evelina London at 13 days old. He was born with half a heart.
Mum Rachel says: “We spent nearly six weeks in three different hospitals, all in which Sam was closely and monitored all the time.
“By the time we were allowed to go home we were overwhelmed with emotion. We were both elated but extremely nervous to be leaving the safe environment at Evelina London.”
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.
“It was stressful and exhausting. When Sam did make it to the second stage and he recovered well we felt like a huge weight had been lifted from our shoulders.
“Having training and medical equipment would have given us more control, more understanding and reassurance.
“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 saves lives and takes away some of the pressure that we felt then it’s desperately needed and welcomed.”