Unable to eat
Lily is tube-fed due to a rare disorder
My daughter Lily was always a perfectly healthy young girl. Until she turned 14 years old...
Out of nowhere, in July 2014, Lily started suffering from dizzy spells.
During one episode, she plummeted down the stairs, whacking her head.
‘She’s a little concussed, but she’ll be fine,’ the doctor at the hospital said.
But things got worse. Four months later, Lily developed tummy pains, was vomiting frequently.
We saw so many doctors, but answers eluded us.
‘What’s happening to me?’ Lily wept.
‘I don’t know, love, but we’ll find out,’ I reassured her.
Lily’s mystery condition was taking its toll, though.
Often nauseous and fatigued, she couldn’t go out with friends.
Then, horrifyingly, in August 2015 Lily started vomiting blood.
Referred to Sheffield Children’s Hospital, doctors ran colonoscopies and endoscopies, but they still found nothing.
Unable to keep anything down, Lily was fitted with a nasojejunal (NJ) feeding tube, so food could be sent down to her small intestine.
Poor girl even had to sit her GCSES in hospital!
Finally, last summer,
having tried everything else, doctors at Sheffield ran a gastric emptying test, which involved X-raying Lily’s stomach while she digested food.
It took far too long for food to go down.
Lily was diagnosed with severe gastroparesis, a condition that left her stomach partly paralysed, unable to contract, empty waste.
Sometimes it clears up naturally, but otherwise, there’s no cure for it. Instead of moping, though, Lily went online to research it, and seek out other sufferers. Speaking to people with
years of experience gave her hope.
But, last November, Lily’s stomach stopped tolerating her NJ tube, and she was hospitalised for two months while doctors ran tests, monitored her.
‘Lily needs a more specialist treatment, called total parenteral nutrition (TPN),’ a consultant told us. ‘It involves inserting a line in Lily’s heart to allow food to bypass the digestive system.’
A complex process, me and Lily’s dad Paul, 47, needed intensive training before we could use it at home.
The equipment needs to be 100 per cent sterile, and everything has to be handled very delicately or else Lily could develop sepsis.
Meanwhile, as we lived nearly 90 minutes away, the hospital put us in touch with The Sick Children’s Trust, who arranged accommodation in Treetop House nearby.
That way, Paul and I could take turns to stay with Lily, while the other was home with our son Elliot, 14.
Then, in February, Lily went to see a gastro specialist in Harley Street, London.
‘You have Ehlers-danlos syndrome, which is how your gastroparesis developed,’ he said, noting her hypermobile joints, a key sign of EDS.
Hypermobility is why her stomach can’t contract.
Adjusting her meds, Lily, now 17, is due to start probiotics to stimulate the good bacteria in her stomach.
She still has to be hooked up to the TPN for 14 hours a day, and is constantly at risk of sepsis.
But our brave girl takes it all in her stride, and is now back at school, studying hard.
Paul and I couldn’t be more proud of her.