Help Ensure That Every Baby Receives The Test That Could Help Save Their Life | Pule Oximetry Campaign - Tiny Tickers.

Thursday, 18 July 2019

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…

Around 1 in 125 babies has congenital heart disease (CHD), and it’s one of the biggest causes of infant mortality in the UK - responsible for around 1 in 13 deaths. Tiny Tickers is the only national charity that exists to improve the early detection and care of heart babies. The charity does this by training sonographers to spot heart defects at pregnancy scans, spreading awareness of the signs of CHD and placing pulse oximetry machines, which can identify life-threatening heart defects, in NHS maternity units.
Pulse oximetry is a quick and simple 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 a life-threatening heart defect, or an infection - so the baby would then be referred for further examinations.
Nearly half of all hospitals in the UK currently offer pulse oximetry testing to all newborns, meaning that 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.
However, the NHS has recently recommended that it will NOT make pulse oximetry testing a mandatory part of its screening programme for newborn babies and 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, and 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 to do with whether parents feel the test is acceptable. In a small number of cases, a baby may have what's called a true false positive result - meaning they would then need further investigations, such as an extended stay in hospital while their baby is checked and additional blood tests, 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, three question survey, to see if parents would consent to their baby having a pulse oximetry test after birth.
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.
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:
Please help us reach as many parents as possible by sharing this post. Thanks for your support. 
Find out more about Tiny Tickers and the NHS consultation on pulse oximetry testing on the Tiny Tickers website here.

Love Sarah

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