Tiny Tickers' Pulse Oximetry survey
Congenital heart disease is one of the biggest causes of death in infants, and around 1 in 125 babies has a heart problem. Tiny Tickers is a national charity that exists to help those babies, their families, and the health professionals who care for them.

Pulse oximetry is a quick and simple test that can be done 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 to do. A low oxygen percentage could be an indicator of a life-threatening heart defect, or an infection. You can find out more about the test here.

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.

Around half of all UK hospitals are already offering the test. However, the NHS has recently recommended that it will NOT make it a mandatory part of its newborn screening programme, 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 given for NOT making the test available to all babies, is to do with whether parents feel it 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 a longer stay in hospital and additional tests, before it's confirmed they, in fact, don't have health problems requiring treatment. Research shows that this may happen for 7 in every 10,000 babies.

At Tiny Tickers, we think that 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 we would like to know your views. We will send the results of this survey to the NHS as part of our response to the consultation.

Would you want your newborn baby to have a pulse oximetry test? *
How would you feel if, following a positive pulse oximetry test, your newborn baby then had further examinations before it was confirmed he/she was perfectly well? *
If you were to have a baby, how important would you feel it was that they had a pulse oximetry test? *
Do you have direct experience of congenital heart disease? *
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