A couple have told how their baby suffered severe brain damage after doctors opted not to give him a £1 blood test.
Mark Griffin, 33, and Katie Lowe, 32, were delighted when baby Brian was born in December after self-funded IVF.
But by the time he was a few hours old, he had started showing tell-tale signs of jaundice, with his skin and the whites of his eyes turning yellow.
Over the coming days, doctors reassured the couple Brian’s condition was normal and opted not to perform a blood test to monitor his toxicity levels.
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Brian Griffin was born in December – but by the time he was a few hours old he had tell-tale signs of jaundice. Doctors claimed the condition was normal and decided not to perform a blood test to monitor his toxicity levels
Bilirubin – the toxic which causes jaundice – got into his brain and became poisonous. Doctors told parents Mark Griffin, 33, and Katie Lowe, 32, that Brian – who was 13 days old – was unlikely to survive the night
His devastated parents, Mark, 33, and Katie, 32, are now desperate to warn others that jaundice, which affects 60 per cent of newborns, can be life-destroying
As a result, the toxin which causes jaundice – bilirubin – got into his brain where it became poisonous and left him fighting for his life at 13 days old.
After a double blood transfusion, he pulled through but was left severely disabled.
Now seven months old, he cannot hear at all, has impaired vision, is unable to lift his head or move voluntarily and is unlikely to ever be able to walk.
The hospital involved has apologised for the ‘tragic incident’ and admitted that ‘an opportunity was missed to treat baby Brian for jaundice’.
His devastated parents are now desperate to warn others that jaundice, which affects 60 per cent of newborns, can be life-destroying.
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Mr Griffin, from Tewkesbury, said: ‘It was too late, in Brian’s case, before anyone realised how serious it was.
‘When he was admitted to hospital aged 13 days, it was obvious that there was something really wrong and that it was more than jaundice.
‘The doctors sat us down and told we were told to prepare for the worst. They didn’t think he would make it through the night.
‘We want people to be aware that jaundice can be dangerous. I’m pretty sure that 60 per cent of babies show signs of it.
‘Unfortunately for my son, they decided he didn’t need testing. People don’t realise it can kill and can also cause irreparable brain damage.’
Brian pulled through after doctors at Gloucestershire Royal Hospital carried out two blood transfusions. But he has been left severely disabled – and his parents said their life has been turned upside down (pictured with brother Arthur)
Mr Griffin said it was up to midwives to decide whether a test should be carried out to determine the seriousness of Brian’s jaundice. The family calculated the test to cost just £1
Mr Griffin said it was up to midwives to decide whether a test should be carried out to determine the seriousness of Brian’s jaundice.
He said the midwife dealing with his son did not feel that it was needed as because jaundice is so common.
The family have calculated that it would have cost just £1 to carry out the test, which looks for abnormally high levels of bilirubin.
They worked out this cost based on the cost of tests in the US, which is $1.
WHAT IS JAUNDICE?
Jaundice is the condition which refers to a yellowing of the skin and whites of the eyes caused by a build-up of bilirubin the blood and tissues of the body.
Bilirubin is a waste product that’s produced when red blood cells break down. It is transported in the bloodstream to the liver.
Jaundice can also be a side effect of liver damage, cirrohsis, gallstones, tumours, malaria and sickle cell anaemia.
Newborn babies are often born with the symptoms of jaundice, but usually in the young it resolves itself without treatment.
Maintaining a healthy weight and managing alcohol intake can reduce the risk of developing the condition.
If left untreated, jaundice can lead to kernicterus – which can damage the brain and spinal cord and can be life threatening.
As the condition develops, children can also suffer seizures and arching of the neck or spine.
Children can also develop cerebral palsy, a condition which affects their movement, as a result of the condition.
Source: NHS Choices
Department of Health data indicates the average cost of similar blood tests for the condition is around £2.
The venipuncture test, which collects a blood sample from a baby’s heel, helps to determine whether there is an underlying cause for the raised levels of toxin.
Brian’s family claim had he been given the test, they would have known his bilirubin was too high – and treatment could have been given to prevent his complications.
He eventually pulled through after doctors at Gloucestershire Royal Hospital carried out two blood transfusions.
But he has been left severely disabled – and his parents said their life has been turned upside down.
Mr Griffin added: ‘To be let down by something that is so easily managed and is 100 per cent preventable is heartbreaking.
‘We have had to say goodbye to the son we were born with and try and embrace this new life as best we can.
‘A seven-month-old should be able to sit up and put something in his mouth but he can’t. He can’t move his legs or lift his head.
‘It’s unreal what this has done to us. The list of things that have to be done is absolutely endless.
‘We have hope in our hearts that Brian will gain bodily functions, but the truth is that we don’t know what the future has in store.’
Mr Griffin said the family is ‘angry and upset’ about what has happened but that Brian has received amazing care and support from the NHS.
The aim of talking publicly about the ordeal is to raise awareness to try to prevent something similar happening to another family.
However, the family is now looking into taking legal action against Gloucestershire Hospitals NHS Trust because of ‘missed opportunities’ in Brian’s treatment.
Mr Griffin said: ‘We have had to say goodbye to the son we were born with and try and embrace this new life as best we can’
The trust said, in a statement: ‘This is a tragic incident and our deepest sympathies are with the family who have had to come to terms with such a life changing event.
‘While we did follow the correct NICE guidance at the time of the birth we do also acknowledge that an opportunity was missed to treat baby Brian for jaundice.
‘We apologise unreservedly to the family for this.
‘We have carried out a full investigation into the circumstances surrounding the incident and we have continued to work very closely with the family so that any lessons that need to be learnt are.
‘NICE guidance in this area has recently changed and we are currently in the process of ensuring our policies, practices and staff are fully aware and trained on these new practices.’
To sign a petition calling for screening for kernicterus – the complication of jaundice which affected Brian – visit Change.org