A mother has revealed the anguish her family suffered after her daughter (16), who is in need of brain surgery, was turned away from Beaumont Hospital.
The National Centre for Neurosurgery had no beds or theatre access for nine patients with malignant brain tumours last Friday.
One of the people who was turned away was 16-year-old Chloe Holian from Donegal.
Her mother Caitriona explained to the Anton Savage Show on TodayFM that the road to treatment has been fraught with setbacks.
“I can’t stress how happy I am with the neurosurgeon and his team are there but it seems our consultant’s hands are tied, what am I supposed to do?” she said.
Chloe was diagnosed in July with a recurrence of Cushing’s syndrome, a metabolic disorder which is caused by abnormally high levels of the hormone cortisol in the blood stream.
After being promised treatment in July and then August, the Letterkenny girl was finally admitted on Thursday and was fasting for a procedure on Friday morning when she was told it was cancelled.
“When we got down they told us that they decided to put off the surgery for a couple of days,” said Caitriona.
She was told that the doctors wanted to perform a dexamethasone suppression test first to confirm that Chloe was, in fact, suffering from Cushing’s – despite previous diagnosis revealing that she was.
However, she soon found out that the test couldn’t be performed.
“At 11am someone in scrubs came around to say it wasn’t fair but he had to tell us she won’t be doing the surgery… and she wouldn’t be getting the major test either,” said Caitriona.
She said he was very empathetic of their situation.
“I felt sorry for him having to tell us that news… I asked him ‘how can you leave her like this?’
“He promised that he was going to organise this test himself. It was quite difficult as you need four people in the surgery to do this test, you need the radiographer, neurosurgeon, endocrinologist and anesthetist.”
Unfortunately, an anesthetist was not available for the test.
Caitriona said that Chloe was quite upset at the news. One of the side-effects of her condition is excessive weight gain and the student has gained six stone since last September.
“She had psyched herself up for the surgery,” explained her mother.
“Everybody was around her encouraging her, they threw a party for her before she went because it was a big thing. Chloe has no confidence because she’s put on an extra six stone. She was looking forward to getting her old self back, she just wanted to go and do this operation and get it over and done with.
“For anybody to have a little bit of a weight gain they can be conscious of it but if you’re 16-years-old and you’ve gained six stone and you can’t explain it…”
Caitriona said the family were forced to pack their bags and return to Donegal but, as of today, they have still not received a rescheduled appointment.
The mother-of-three is struggling to juggle home life with trips to Dublin but she said the family’s life is on hold until the tumour is removed.
This is the second time that Chloe has developed Cushing’s, in 2009 she was sent to London for surgery as treatment was not yet available in Ireland.
Patients lives are being threatened by delays, according to the head of the country’s national brain surgery centre. Clinical Director Mohsen Javadpour says people are at risk of dying while they’re waiting for treatment.
Filed under: Cushing's, pituitary, Treatments | Tagged: cortisol, dexamethasone suppression test, neurosurgeon, pituitary surgery, recurrence, weight |
CushieBlog 
I had Cushings Syndrome. Diagnosed a long time ago in 1973. I was fortunate to be diagnosed and had a BLA in 1974. There is a difference between the Syndrome and the Disease. Syndrome happens on the adrenals and the Disease is in the Pituary. I do know that the two can overlap, but once you have it, it does not go away. It is possible the symptoms subsided,but un fortunately does not end the journey. I will hope and pray that the necessary treatment happens ASAP.
Please contact me if you’d like to share. Sometimes it’s lonely out there.
Please aske for a petro sinus sample test if all other tests are failing and if no help from current hospitals I recommend Barts in London