Parents of a baby boy who has lived despite doctors’ predictions are calling for financial aid to help their son receive treatment abroad.
Edward and Naomi Perry of Tromode in Douglas are appealing to the public through website Go Fund Me to enable their eight-month-old child, Maxwell, undergo stem cell treatment in Panama or Mexico.
Just two days before his due date in February, Maxwell showed fewer signs of movement than usual. After a visit to Noble’s Hospital in Braddan, his mother was rushed in for an emergency C-section.
Born without a heartbeat, Maxwell was miraculously brought to life again. However, it was soon found that he had suffered multiple organ failures and had brain damage.
Mr Perry, a business development manager, said he had ’expected the worst’ when he rushed to the hospital.
’When I arrived, my wife was very upset and we were both extremely worried. [The doctors] got Maxwell out, but sadly he had no heartbeat.
’They pumped him full of everything you can imagine. After 35 minutes the doctors and nurses were shaking their heads and just as they were going to stop, Maxwell developed a heart beat, a very soft heartbeat but he was alive!’
Maxwell was immediately taken to the special care baby unit.
’My wife and I were crying, not knowing what had happened and why this was happening to us,’ he added.
’It felt so unfair and like the worst living nightmare you can ever imagine.’
Mr Perry said they were approached by a consultant and lead nurse who explained that they expected their son to die within a few hours and invited the parents in to say their goodbyes.
Much to everyone’s surprise and delight, Maxwell proved everyone wrong by surviving the night.
However, he suffered seizures and swelling around his head.
Over the next week he improved, but MRI scans showed he’d suffered organ failure and had hypoxic ischemic encephalopathy (HIE), which is a type of brain damage in infants whose brains don’t receive enough oxygen and blood.
His condition steadily improved and he was slowly taken off the oxygen supply in the hospital.
One of the biggest achievements early on was Maxwell switching from being fed through a tube to bottle feeding.
’We were over the moon, as were the nurses,’ Mr Perry said.
Maxwell was discharged after spending weeks at the hospital but he was diagnosed with having severe HIE and cerebral palsy that would become worse in future.
Their best option is stem cell treatment, Mr Perry told the Manx Independent. But that is not available on the NHS in the Isle of Man.
He said that Maxwell has already had treatment in Mexico this September and that they are awaiting results.
’We’ve done some of the funding ourselves,’ he said.
’Now we’re going to probably need some assistance because the costs are getting quite high.’
He said Maxwell is ’doing very well’, despite having seizures for which he has medication.
’The seizures he’s having can do further damage to his brain,’ Mr Perry said.
’Hopefully we can get these under control. We get as much help as possible, but stem cell treatment is the most advanced option.’
In Mexico, Maxwell had stem cell injections into his hip every day for four days with doctors monitoring him for a week after to ensure he did not have an adverse reaction.
This therapy is a bone marrow treatment and is hoped to ’travel up to the brain’ to stop seizures at its source. ’This costs £8,000 to £10,000 per time,’ Mr Perry said.
’They say it can take up to six months to see results.
’We might have to go back to Mexico, we don’t know. We’re waiting to see.’
The family has considered having his further treatment if need be in Panama because it’s ’less invasive’ compared to the one in Mexico, as it is delievered through an IV line.
’We want to make sure he stays with us and we’re doing everything to keep him,’ Mr Perry added.
Search their page here: www.gofundme.com/f/hie-stem-cell-funding/
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