A couple have told how their miracle baby suffered severe brain damage caused by untreated jaundice – after doctors opted not to give him a £1 blood test.
Mark Griffin and Katie Lowe were over the moon when she gave birth to little Brian in December after self-funded IVF.
But by the time he was a few hours old the tiny lad 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 that Brian’s condition was normal and opted not to perform a blood test to monitor his toxicity levels.
As a result, the toxin which causes jaundice – bilirubin – got into his brain where it became poisonous and left Brian fighting for his life at 13 days old.
After a double blood transfusion, the youngster miraculously 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.
Devastated Mark, 33, and Katie, 32, are desperate to warn parents that jaundice, which affects 60 per cent of newborns, can be life-destroying.
Lorry driver Mark, of Tewkesbury, Glos., said: “Brian was a frozen embryo, so to have that birth was an amazing thing in itself.
“He survived the thawing process, made his way to the womb and survived the nine months to birth before being born a healthy, happy boy. It was amazing.
“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.”
Brian said it was up to midwives to decide whether a test should be carried out to determine the seriousness of babies’ jaundice.
He said that the midwife dealing with his son did not feel that the test was needed.
The family have calculated that it would cost just £1 to carry out the test.
“It was too late, in Brian’s case, before anyone realised how serious it was,” Mark said.
“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.
“It was the longest night of our lives.”
Amazingly, Brian pulled through after doctors at Gloucestershire Royal Hospital carried out two blood transfusions.
But the little boy has been left severely disabled – and Mark and Katie said their life has been turned upside down.
Mark said: “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.”
He added: “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.
“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.”
“Not testing babies with jaundice is madness. It’s playing Russian roulette and that’s what happened to our son,” he added.
Mark said they are “angry and upset” about what has happened but said they have received amazing care and support from the NHS.
Their aim in talking publicly about Brian is to raise awareness to try to prevent something similar happening to another family.
However, they are now looking into taking legal action against Gloucestershire Hospitals NHS Trust because of “missed opportunities” in Brian’s treatment.
Babies should receive phototherapy to tackle jaundice when the level of bilirubin in their blood is at or above 257 moles per litre.
But Brian’s levels were almost double that by the time he received the treatment, at around 780 mol/l, his mum, Katie Lowe, said.
Phototherapy involves the child being exposed to fluorescent light that is absorbed by the skin to reduce levels of the potentially harmful compound.
Katie, a former childcare worker, said: “Brian’s levels of bilirubin were off the scale.
“If he had this £1 blood test earlier, they would have known his bilirubin was too high and he would have had been put under the lamps.
“Essentially, he wouldn’t be the way he is now.”
Brian’s family believe it would have cost just £1 for doctors to carry out a blood test.
They worked out this cost based on the cost of tests in the US, which is $1.
Department of Health data shows that the average cost of blood tests for clinical biochemistry, haematology and immunology is £2.
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.
“Whilst 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: https://www.change.org/p/theresa-may-mp-reversal-of-decision-kernicterus-affects-normal-children-its-wholly-preventable
