The UK’s National Screening Committee has been considering routine pulse oximetry screening for critical heart defects in newborn babies for a number of years.
A recent review undertaken by NHS England recommended to the UK National Screening Committee (UK NSC) against using pulse oximetry as an additional test in the newborn and infant physical exam (NIPE).
A public consultation is now being held on whether the evidence presented supports the decision, if you have an opinion on the importance of pulse oximetry testing this is your chance to speak.
Pulse oximetry screening is a safe, painless and simple test that has been shown, in research studies involving almost half a million babies, to identify consistently babies with life-threatening heart defects (critical congenital heart defects or CCHD) before they become seriously unwell.
An overview of the subject areas covered by the consultation, including The National Screening Committee’s outline regarding their current decision against offering pulse oximetry in all hospitals.
All responses to the consultation will be of great value to the consultation organisers, especially parental feedback on their own experience of pulse oximetry testing.
If your child was offered pulse oximetry testing, and their congenital heart disease was diagnosed because of the test, please share this with the consultation. Positive stories are very important.
Should you also wish to share your experiences relating to issues affecting:
and how these were addressed in a positive way, that too will be of great value to the consultation.
There are four steps to the consultation process:
Pulse Oximetry could have benefited children like Georgina, who was born with a heart condition. Having a heart problem in the family is difficult enough to deal with, but what was even harder for Georgina’s family, was the fact that the condition went undiagnosed for almost two years. Alex Smith, parent of Georgina tells her story:
“Georgina’s condition was missed at the 20 week scan while I was pregnant. After she was born I knew something was wrong. She just wasn’t well. I took her time and time again to see her GP and other medical professionals but they didn’t connect her symptoms with a heart problem, they said things would improve and I should just give it time.
“It was so stressful having a sick child and not being told what was wrong, as a mum all you want to do is make sure your child is well. Knowing there is something wrong with her but not knowing for almost two years what, was just awful.
“I’m campaigning and pushing for the introduction of this test for every newborn baby so other parents do not have to go through what my family has had to experience. It’s such a simple change and a quick test, but it could help so much in giving reassurance to families and in detecting babies heart problems early”.
Alex and Georgina are not alone: only around a third of all children with congenital heart disease have their conditions detected before birth so it is essential this test is introduced for newborns in the UK.
The test is non-invasive, takes just a few minutes and can be done along-side existing newborn checks. Research shows comprehensively that Pulse Oximetry testing can greatly increase detection rates to around three-quarters*. This prevents the distress, harm and risk to life that occurs when conditions go undetected for days, weeks or even months.
Newborn babies already have a number of tests as part of their screening after birth: we are calling for this quick, easy to administer and inexpensive test to be part of this process. Already a number of hospitals are leading the way and using it, but we want every baby to be covered and all parents to have greater peace of mind.
CHF are extremely excited to see the pulse oximetry pilot under way! The pilot is being run in 15 NHS trusts.
This simple test for newborns would mean early diagnosis and must become part of newborn examination. CHF is proud to be part of the campaign coalition that brought pulse oximetry to this major pilot stage.
The aims of the pilot are to:
• understand the impact of implementing newborn pulse oximetry screening on NHS services;
• find out if it is feasible to roll out pulse oximetry nationally as an addition to the existing newborn and infant physical examination tests within 72 hours of birth.
CHF are hoping that this pilot will demonstrate the cost-effective and accurate early diagnosis of heart conditions in newborns that pulse oximetry tests provide, and so pave the way for a national roll out for all newborns in the UK. Let’s get going on giving our children the best care possible!
To find out more visit:
Congenital Methemoglobinemia Identified by Pulse Oximetry Screening
‘Congenital methemoglobinemia is a rare condition caused by cytochrome b5 reductase deficiency, cytochrome b5 deficiency, or hemoglobin M disease. Newborn pulse oximetry screening was developed for the early detection of critical congenital heart disease; however, it also enables the early identification of other hypoxemic conditions. ….’