Parents of a baby who died at three days old are calling for a simple test which detected issues with their child to be made standard across the NHS.
And they are urging new mums and dads to insist their newborns are given the pulse oximetry test at four hours old.
The check, which measures the amount of oxygen in a person’s blood, showed that Huxley Birchnall’s oxygen levels were a bit lower than normal.
Further tests were carried out which revealed that he had a very rare issue called a Vein of Galen Malformation (VGM).
It was so rare that cardiologists at the hospital where he was born in Leicestershire had never seen a case before.
The family was rushed to Great Ormond Street Hospital in London, because it is the only children’s hospital in the country that treats the condition.
There his mum Aimee and dad Luke were given devastating news that he would not survive.
Mrs Birchnall said: “They said to us that if we’d brought Huxley home, he probably would have died in his sleep that night.
“His oxygen levels would have been so low. We wouldn’t have known, and we would have just woken up and he would have passed away in the next-to-me crib.”
She added: “It’s sad that Huxley never made it home but because the issue got found at hospital and we went straight to Great Ormond Street and then we got support at the Rainbow hospice it just meant we didn’t have the trauma at home, if that makes sense.
“With Huxley we wouldn’t have been able to access Rainbows so we would have lost all that and his older sister Thea would have more traumatic memories because she’d be like “Why did he die at home?” and things like that.
“We wouldn’t have any of the memory stuff. We have a photobook of Huxley in the lounge and it’s always the first thing that Thea shows people when they come round.
“Like obviously we’ve had health visitors and midwives and other people [because I’ve recently had another baby called Lennox} and she always shows them.”
She said: “You just think that we wouldn’t have had that if they didn’t do the test.”
The 29-year-old says her research has revealed that the Midlands was used as a test area for doing the test on newborn babies and thinks it needs to be rolled out across the country.
Mrs Birchnall added: “I’d urge parents to ask for it in the lead up to their baby being born. But some hospitals don’t offer it and it’s something that you have to ask for.
“It would be nice if it was just a standard thing. It shouldn’t be different because you live in a different county.”
She added: “My friend has literally just had a baby as well and they did pulse oximetry on her little boy and his oxygen levels were low and he’s in ICU at the minute and they’ve found that he’s got a little heart murmur.
“If he hadn’t had the tests then they could have come home and he might have had issues with his breathing and they would have had to call an ambulance and rush him back in.
“It just shows that it’s not just VGM, like with Huxley, it’s other things that it’s highlighting as well.
“The cardiologist who found Huxley’s VGM is in the process of writing a paper for the organisation that comes up with all the policies for hospitals to say “look at this. Why aren’t you doing this with other hospitals. This is what we found.”
A Department of Health and Social Care spokesperson said: “A UK National Screening Committee consultation to establish the effects of screening all babies for low oxygen was inconclusive, but NHS clinicians have agreed to undertake further research.
“The UK has high-quality antenatal programmes which require babies to be checked for congenital heart disease twice, and our newborn physical examination programme also checks for congenital heart disease twice by the time the baby is eight weeks old.”