NNUH help shape future new-born care

Rose after her op

The Norfolk and Norwich University Hospital NHS Foundation Trust (NNUH) has introduced screening for all babies for congenital heart defects upon birth, after the successful completion of a national pilot program.

The East Anglian hospital was one of seven to be invited to join the first phase of the Department of Health national screening pilot to test pulse oximetry screening (POS) on new born babies as part of the newborn discharge process. The new pilot proposed screening all babies upon birth for congenital heart defects not detected during pregnancy by routine ultrasound scans and newborn examination.

One parent who benefitted from the pilot was mum Kate Emery. Kate, from Sprowston, gave birth to Freya in 2009 who sadly passed away at six weeks old following an undetected congenital heart defect. Kate gave birth to second child, Robyn in November 2010 and Rose in September 2014 following routine deliveries. Due to the loss of Kate’s previous daughter Freya, both Robyn and Rose received additional monitoring during the pregnancy and delivery.

Third daughter Rose was delivered naturally on the Midwifery Led Birthing Unit (MLBU). As part of the pilot Rose was able to receive an additional check on discharge which saved her life.

Dr Roy explained: “The POS test showed that Rose’s oxygen level was low suggesting there could possibly be a problem with her heart. Due to the result I immediately performed a heart scan on Rose which identified that Rose had a rare congenital heart condition known as obstructed Total anomalous pulmonary drainage (TAPVD). This is where the pulmonary veins, the large blood vessels that receive oxygenated blood from the lungs and drain into the left atrium of the heart, hadn’t connected correctly. Thanks to the pulse oximetry the problem was picked up and acted on early.”

Rose was transferred to the Evelina Children’s Hospital in London and at the age of one day old received open heart surgery. The surgery was successful with Rose requiring yearly check-ups. Had Rose’s condition not have been picked up the family would have suffered the same tragedy as they had with Freya a few years before.

Kate added: “I cannot thank the staff enough for carrying out the extra test which took literally minutes. Without it we could have lost Rose as we did Freya and I have Dr Roy, the team and the test to thank for that. The N&N saved her life”

Dr Roy Rahul, continued: “Kate is a perfect example of the difference this simple test can make. Without it we wouldn’t have picked up the heart defect in Rose and she would no longer be with us. The pilot has been completed but at NNUH we continue to offer this test, which is likely to save and benefit many more babies, parents and families from going through the tragic circumstances that Kate and her family have had to experience.”

Pulse oximetry is a simple, well established, accurate, non-invasive test where a light sensor is placed on a baby’s right hand and one foot to measure the amount of oxygen in their blood. Its use can help the NHS in early detection of many more babies with serious heart disease so they can be treated sooner to prevent collapse, deaths and improve outcome.

Dr Roy Rahul, NNUH Neonatal consultant said: “This is a massive development in new-born checks on babies. This simple test can additionally prevent many babies born with other significant non-cardiac life-threatening conditions such as respiratory problems or early-onset infection from leaving hospital without being diagnosed. Detection at birth means babies can receive treatment early helping to save lives, reduce physical harm and prevent distress to families.”

Congenital heart defects affect about 3,500 new-born babies every year. NNUH delivers approximately 6,000 babies a year, of those, 8-10 per 1,000 will have a defect at birth and of those 2-3 babies per 1,000 will have a critical heart defect.

Babies are screened for heart problems as part of the NHS Fetal Anomaly Screening Programme at the 20 week scan and during the NHS Newborn and Infant Physical Examination (NIPE) prior to being discharged home after being born but only 50% are detected at this early stage. The new test will identify more of these babies with congenital heart defects at an early stage and increase the number detected to 95%.