Most young mothers are used to getting up in the night to feed their babies, but imagine what it would be like knowing that if you missed a feed, your baby could die.
That’s the heart rending situation facing Oswaldtwistle mum Amanda Dean after her nine-month old son William Orr was born with a rare genetic condition.
Amanda has to feed William every four hours day and night to keep his blood sugar level at safe levels.
William was born with congenital hyperinsulinism, which affects one in 50,000 children in the UK. It means his pancreas keeps producing insulin, creating low blood sugar levels and starving the brain of oxygen.
Amanda, 32, said: “Night times are the scariest, going to sleep. In a worse case scenario he could die, it is so silent. I could check his blood sugars now and he’d be fine and in ten minutes it could drop massively. It’s so important that I’m with him all the time.”
William’s blood sugar was low when he was born five weeks early and doctors did not realise it was a genetic condition for a few days.
Amanda, of Willows Lane, said: “Normally when a child is born with low blood sugar levels it stabilises. But William’s were deteriorating. I was terrified, devastated and I did not know whether he was going to survive.”
William was transferred to Alder Hey Children’s hospital in Liverpool, one of only three British hospitals to specialise in the condition. He was in hospital for a month and Amanda gave up her job as a manager at a Learning Disability centre to become his main carer.
Amanda who lives with partner Douglas and older son, James, 7, said it was still too early to tell whether William’s development had been affected.
She said: “The drugs are working for now, but if they stop then William will have to have his pancreas removed.
“Having your pancreas removed is a risky operation. And as the condition infects his entire pancreas, even if they remove 98 per cent of it, the 2 per cent could be infected.”
Both Amanda and Douglas carry the gene that transmits the condition and older son James is going to be tested to see if he does as well. Amanda also wants to see mandatory blood sugar tests for all newborn babies to help avoid potential tragedy.
She said: “If it is detected the baby can get the right medicine to stabilise it.”