No chocs, no cakes, no sweets
As his pals tuck into treats, my Jude is left out, but it’s not because I’m a strict mum
Either the milk came back up – or out of his nappy
Joanna Carrington, 33, Hoddesdon, Hertfordshire
As a gut-wrenching scream jerked me out of my sleep, I looked at the clock: 2am.
It wasn’t anything new for me and my husband Steve, then 29.
Our son Jude, just 6 months, had been waking up, crying in pain, for the last two months.
He was suffering from terrible tummy pains and awful bouts of diarrhoea.
Our first child, he’d been born in October 2012 with two front teeth.
Unable to breast-feed him, I’d expressed milk with a pump and fed him that way.
When he was 4 months old, to give me a rest from pumping, we went on to formula.
That’s when it had all started.
Either the milk came back up or went straight out of his nappy.
There was also bloating, rashes and flushes – my baby was so ill.
‘He’s gone again,’ I’d say to Steve, just half an hour after I’d changed Jude’s nappy. First our GP diagnosed him with a milk allergy, and then a paediatrician prescribed hypoallergenic milk. But still Jude was struggling with reflux and diarrhoea. Now, at 6 months old, we hoped that weaning him onto solids would change things. ‘Just one more mouthful, Jude,’ I said as I tried to spoon some peas into his mouth. Although the diarrhoea and other symptoms did get a little bit better – it wasn’t by much. And by the time he was 8 months old, Jude was refusing to eat or take any milk in. I was worried sick. Back and forth to the doctors, they didn’t know what was wrong. Then, one day, as he was crawling over to me, Jude passed out. His little body lay lifeless on the floor. Scooping him up, we frantically rushed him
straight to Princess Alexandra Hospital in Harlow. I phoned Steve on the way.
There, they told us that Jude was very dehydrated and they put him on rehydration salts.
‘If we can’t get his situation under control, then we’ll need to attach a feeding tube,’ they warned.
Discharging him a few days later, they told us to keep him on rehydration salts and to get him to drink as much milk as possible.
They also gave us a referral to Great Ormond Street Hospital.
His condition got a little better, but we were still finding it hard just feeding him on the hypoallergenic milk.
Then in November 2013, when Jude was a year old, we got to see a specialist at Great Ormond Street Hospital.
‘We’re going to have to do a gastrointestinal endoscopy,’ doctors told us, recognising that something was severely wrong with our son.
The following March, we had the tests done and we finally got an explanation.
‘He’s got gastroparesis and lymphonodular hyperplasia,’ he explained. It means the nodules in his stomach are so damaged and his nerves, controlling the muscles, had stopped working – so that he wasn’t able to process food.
Finally, we had an answer and now knew what condition poor Jude was suffering from.
They also measured his refluxes – with a tube through his nose for 24 hours.
Jude was grabbing at the tube – he really hated it – but knowing that this would be a way to try to help my boy, I actually felt relieved.
When the tests came back, they revealed that Jude had severe refluxes, meaning he can’t eat foods normally through his mouth.
So they put him on different medicines to try and stop the inflammation.
But in May last year, they decided to put him on a feeding tube for the foreseeable future.
They attached a feeding tube to pump a hypoallergenic formula milk directly into his stomach for 19 hours every day.
But learning to live with it was very hard for a young lad.
‘You’re going to have to wear this at all times,’ I told Jude when we got home.
‘Will I hurt less then, Mummy?’ he asked.
‘Yes, it will help you to get better,’ I told him.
He still visits GOSH for checkups and they allowed us to test foods under their supervision to see what he could stomach.
‘Yummy!’ he said, when he tried potato last November.
But, sadly, potatoes made him vomit, along with broccoli.
So far, no solid foods we’ve tried have worked.
Now, he wears the pump on his back, like a backpack – getting all the nutrients that most people would get just from normal food.
He’s even named it Harold – after a character in one of his favourite books.
It’s hard seeing him in so much pain when he tries the different foods.
And it’s heartbreaking seeing him unable to eat like other children can. ‘Mummy, they had cake at school again today,’ he said recently, looking upset. I feel sad for him that he can’t eat things that other children take for granted – like Easter eggs or Christmas dinner.
So much of people’s social lives revolve around eating.
We treat Jude in other ways – buying his favourite dinosaur figurines every few months. ‘As he grows up and his immune system develops, his problems could get a bit better,’ doctors have said.
But I just want him to be free from pain.
Jude is now 5, and a bubbly little boy. He loves school – but knows that he’s different to the other girls and boys.
We’re currently trying to raise £50,000 to get Jude into a specialist children’s hospital in the USA for intensive tests.
All kids should be able to enjoy treats like ice cream and cake without pain.
And I really hope that, one day, my boy will be able to, too.
Something was severely wrong with our son