A teen who is sick more than 30 times a day because of a rare stomach problem says she feels ‘abandoned’ by doctors.
Caitlin White, 19, claims she’s been ‘left to die’ after medics discharged her and refused to offer further treatment.
The young girl is 5ft 5in tall but weighs less than six stone as a result of gastroparesis – a condition that means her stomach is partially paralysed.
Caitlin White, 19, has gastroparesis which means her stomach is partially paralysed
The young girl is 5ft 5in tall but weighs less than six stone as a result of her rare condition
Between 2014 and 2015 doctors at Ninewells Hospital in Dundee tried several times to insert feeding tubes but the procedures were unsuccessful.
The teen says one incident left her fighting the potentially deadly blood infection sepsis.
Caitlin, who lives with her grandparents in Perth, Perthshire, survives on soup, gels and powders.
She struggles to absorb sufficient calories and suffers excruciating abdominal pain due to her condition.
Caitlin now spends eight to nine hours a day at Perth Royal Infirmary where she gets infusions of potassium, magnesium, iron and phosphate to keep her alive. Pictured: With her mother Pamela
It has led her to develop cyclical vomiting syndrome, meaning the teen is often sick more than 30 times a day, and is so weak she needs a wheelchair outdoors.
Caitlin now spends eight to nine hours a day at Perth Royal Infirmary (PRI) where she receives infusions of potassium, magnesium, iron and phosphate to keep her alive.
But the hospital does not have the specialist expertise to prescribe artificial feeding.
Extreme constipation – six to seven weeks can elapse between bowel movements – has also led to a build-up of bacteria in her small intestine that has ravaged her immune system.
The condition has led her to develop cyclical vomiting syndrome, meaning the teen is often sick more than 30 times a day, and is so weak she needs a wheelchair outdoors
Since last October she has suffered five bouts of sepsis.
Caitlin said: ‘It’s getting to the point I have become resistant to so many antibiotics they don’t know what they’re going to do when it flares up again.
‘I’m exhausted. I’m in a wheelchair.
‘I have to eat and drink myself orally because Ninewells have refused to offer artificial nutrition since 2015 and my weight is dropping. PRI are very worried.
Pictured: Caitlin when she was 15 with her 13-year-old brother Thomas in Ninewells Hospital
‘We’re at a stage where they said they don’t think I’ll be here in six months unless we get a proper care plan in place.’
The case has been pursued by Roseanna Cunningham, MSP for Perthshire South, and raised with Health Secretary Shona Robison, whose constituency covers Ninewells.
Scotland’s chief medical officer Catherine Calderwood, and former NHS Tayside boss Lesley McLay, are also aware of the case.
Caitlin’s ordeal began when she was just 15.
Stomach pain and vomiting saw her weight drastically drop from ten to eight stone in just three months.
The teen said: ‘They [doctors] don’t think I’ll be here in six months unless we get proper care’
In August 2014 she was admitted to PRI after she started spewing a black liquid.
Doctors diagnosed stomach paresis and she was transferred to Ninewells, where she spent the next ten months.
She says she had eight feeding tubes surgically inserted via her nose and four inserted via her abdomen that bypassed her gut to deliver feed direct to her bowel.
But her constant vomiting and a condition called Ehlors Danlos syndrome, which means Caitlin’s muscles are abnormally slack, meant the tubes came loose – sometimes within hours of surgery.
She also underwent Total Parenteral Nutrition (TPN), where nutrients are pumped directly into a patient’s bloodstream.
But this was stopped when she develop sepsis in March 2015.
When a fourth attempt to feed her via an abdominal tube failed in June 2015, she claims doctors at Ninewells ‘gave up’.
Caitlin said: ‘They took the tube out and the consultant at the time said ‘go home, try the oral route, we can’t do anything else for you’. That was it.’
Caitlin, who lives with her grandparents in Perth, Perthshire, survives on soup, gels and powders
Her grandmother, Laura White, 68, said the family have been left despairing and ‘totally bewildered’ at her treatment by Ninewells.
The pensioner said medical staff insinuated her granddaughter had been pulling out her own feeding tubes and had an eating disorder.
She also claims they suggested Caitlin’s agonising stomach cramps were imaginary ‘phantom pains’.
Her family have paid for numerous private consultants in Scotland and London to review the case.
One gastroenterology expert describing it as the worst case of gastro-paresis he had ever seen.
But care plans, scans and tests recommended by the private medics have been refused by NHS Tayside.
The family is now trying to raise £3,000 to pay for recommended genetic tests.
Mrs White said the family are desperate for help.
She said: ‘Caitlin was 53kg (8st 4lbs) when she went in and after 10 months she weighed 43kg (6st 10lbs), but they discharged her and said ‘go back to the oral route’.
‘I said “what’s plan B?” but all I got was a blank stare.
‘We’ve had meeting after meeting and Ninewells refuse to treat her now.
‘They said she’s had a serious infection from TPN, but what do they want her to do – just starve her to death?
‘I can’t understand why for the last three years they’ve allowed her to deteriorate into this state.’
An NHS Tayside spokeswoman said: ‘Due to patient confidentiality we cannot comment on individual cases.’