Why we want to end the pulse oximetry postcode lottery

Your postcode shouldn’t determine your baby’s access to a pulse oximetry test

We passionately believe that every newborn should have the test that could help save their life. That is why we encouraged everyone to respond to a national consultation in August 2019 to help us ensure that this becomes a mandatory part of newborn testing in the UK. The NHS is now considering the public response, and is seeking approval from the Health Minister to conduct further research. Coronavirus has delayed this process and we are now expecting further updates in the latter half of 2021. 

Naturally we’re disappointed that the result hasn’t been immediately positive, but we hope that the NHS will take on-board the in depth evidence presented by health professionals, and parents, alike, and make a decision that benefits every newborn.

Every year around 1,000 babies leave hospital with their congenital heart defect undetected, potentially putting their lives in danger.

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 408 pulse oximetry machines in NHS Trusts across the UK and counting. We believe that every newborn should have access to a pulse oximetry test as part of newborn testing. It is a simple, quick and painless test to ensure that no baby leaves hospital with an undetected heart defect.

Here at Tiny Tickers, we passionately believe that every baby should have access to this test – and we’re continuing to campaign for the test, and to fund and place pulse oximetry machines in UK hospitals.

What is Pulse Oximetry?

Pulse Oximetry testing helps to detect heart defects by measuring oxygen levels (oxygen saturation) in the blood. It uses a light sensor to assess the level of oxygen in the baby’s blood. The test is carried out using a pulse oximeter, a specialist machine that is used routinely throughout the world to measure the amount of oxygen in the blood. A small probe is wrapped around the baby’s hand and foot and connected to a small machine that measures the baby’s oxygen levels by shining a light through the skin.

This test takes a just a few moments, at no discomfort to the baby. Not every baby will be born displaying signs and symptoms of CHD, and with this machine many more life-threatening defects can be detected.

In the USA, where pulse oximetry screening is routine for all babies, a large study has reported that death from critical heart defects was reduced by one third in babies offered the screening compared with those who were not offered it.

Currently only around half of the babies born in the UK are offered this test – meaning around half will not be tested. Whether or not a baby has the test depends on the hospital of birth. If the NHS was to recommend this test as part of mandatory newborn screening, then all babies born in the UK would be offered it.

The NHS has been considering routine pulse oximetry screening for critical heart defects in newborn babies born in the UK for a number of years. The UK National Screening Committee (UKNSC) launched a public consultation on its recommendation not to make the test mandatory in August 2019. If that recommendation is passed, it means it will continue to be up to each individual NHS Trust whether or not to offer pulse oximetry testing – and that means the postcode lottery of whether a baby is offered the test will continue.

View where we have placed pulse oximetry machines to date.

Help us end the postcode lottery – share your story

• Have you recently had a baby? Was your baby offered pulse oximetry screening?
• Are you having a baby soon?
• Have you heard of pulse oximetry screening?
• Does your hospital offer pulse oximetry screening?
• Would you like the test to be offered to your baby?
• Have you had a baby who had a serious heart defect?
• How was the problem picked up?
• Was there a delay in diagnosis?

If you can help by sharing your story and your feelings about pulse oximetry, please contact us by emailing pulseox@tinytickers.org.

Read Tommy’s story, which highlights why we firmly believe that pulse oximetry testing should be a mandatory part of newborn screening.

Also you can read more about the process on the University of Birmingham‘s website. We’re proud to be working alongside them to help ensure every newborn is offered the test that could help save their life.

Why we believe that pulse oximetry machines could save lives