The NHS has recommended that pulse oximetry testing which can help save babies’ lives, should NOT be part of the mandatory newborn checks. Here’s why I’m supporting Tiny Tickers in trying to reverse that decision…
What Is Pulse Oximetry Testing?
Around 1 in 125 babies have congenital heart disease (CHD). It’s one of the biggest causes of infant mortality in the UK. And is consequently responsible for around 1 in 13 deaths. Tiny Tickers is the only national charity that exists to improve the early detection of heart conditions in babies. The charity does this by training sonographers to spot heart defects at pregnancy scans, and raising awareness of the signs of CHD. Tiny Tickers places pulse oximetry machines in NHS maternity units which can identify life-threatening heart defects.
Pulse oximetry is a quick and non-invasive test that can be carried out on a newborn baby to find out the percentage of oxygen in their blood. It doesn’t hurt and it takes just a few minutes. A low oxygen percentage could be an indicator of an infection or a life-threatening heart defect. If this occurs, the baby can then be referred for further examinations or specialised care/treatment which could help save their life.
Nearly half of all hospitals in the UK currently offer pulse oximetry testing to all newborns. So around half of all newborns miss out on this potentially life-saving test simply depending on where they are born.
Babies born with serious heart problems are at risk of disability or even death if not diagnosed before they fall into the early stages of heart failure. Tiny Tickers has now placed 96 pulse oximetry machines in NHS Trusts across the UK and counting. They believe every baby should have the test that could help save their life.
Research shows that, combined with antenatal screening, pulse oximetry is able to detect 95% of cases of critical heart disease. In the US, deaths from congenital heart disease fell by 33% in states that made the test mandatory.
What Is The Current NHS Recommendation?
The NHS has recently recommended that it will NOT make pulse oximetry testing a mandatory part of its newborn screening programme. The NHS has launched a public consultation on that recommendation. If this recommendation is approved, it means around half of all babies will continue to NOT be offered the test. Therefore the postcode lottery of whether a baby has the test will continue.
One of the reasons the NHS committee that made the recommendation has given for NOT making the test available to all babies, is based on whether parents feel the test is acceptable. In a small number of cases, a baby may have what is called a true false positive result. This means they would then need further investigations. These may entail additional blood tests or an extended stay in hospital before it is confirmed their heart is healthy. Research shows that true false positives (where the baby turns out to have a healthy heart and no other problems) may happen for 7 in every 10,000 babies.
Tiny Tickers believes most parents would accept these potential follow-up investigations in order to know whether their baby has a healthy heart. Or whether they have a potentially life-threatening defect, but they need the views of parents to back this up. They have produced a quick four question survey, to see if parents would consent to their newborn having a pulse oximetry test.
Help Ensure That Every Baby Receives The Test That Could Help Save Their Life
I’m helping Tiny Tickers because it’s so important that the NHS hears as many parents’ voices as possible. Tiny Tickers will send the results of the survey to the NHS as part of their response to the consultation.
After a complicated birth (read my story here) my daughter stayed in the neonatal unit for 24 hours. When I saw her attached to various wires, tears immediately came to my eyes. And were accompanied by that horrible lump in my throat. If I had the option to have the pulse oximetry test for further reassurance I would have done it in a heartbeat.
Every year around 1,000 babies leave hospital with their congenital heart defect undetected, potentially putting their lives in danger. While newborns have mandatory tests on their hearing, why not make pulse oximetry testing for potentially life-threatening heart defects mandatory as well? Please help change this by taking the survey. It’s only four questions and you don’t have to enter any personal details.
Take the survey here: https://forms.gle/Wrhj5iJpxSjpA9iK6
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Find out more about Tiny Tickers and the NHS consultation on pulse oximetry testing on the Tiny Tickers website here.