Mum's anguish: MRI scan to confirm if baby Ben is blind or not could take up to year
The distressed mother of a baby in need of an MRI scan to discover if he has any sight has spoken of her anger at having to wait a possible "agonising" 12 months for the procedure to take place.
Amy Donaldson's son Ben was diagnosed as being blind at 12 weeks old.
But after further examination, experts at the Royal Victoria Hospital said there was a chance he could see, but needed a vital MRI brain scan to diagnose him properly. However, a delay in installing a new scanner at the Children's Hospital – along with a growing waiting list – means Ben may have to wait until next summer to undergo the procedure.
Amy, a mother-of-two from Lisburn, said the situation had left her family in an "awful limbo".
The Belfast Health and Social Care Trust insisted he will have to wait 26 weeks for the scan, not 12 months. But Ms Donaldson said she still had no date confirmed. She described it as "ridiculous" that anxious families and patients had to wait so long.
Ben is one of 271 children who are on a waiting list for an MRI scan at the hospital, that requires a general anaesthetic.
"Being told all these things about Ben has been extremely worrying and stressful. And that was before being told that the children's waiting list for an MRI is up to a year," she told the Belfast Telegraph. "It was the consultant who told us that it was likely to be up to one year for Ben to get the appointment."
Ben – who was born in December– was admitted to the Royal Children's Hospital when he was seven weeks old, as he couldn't breathe or feed properly.
The doctor then noticed his eyes were roaming.
"Further tests were needed and we were sent home not knowing if Ben could see or not," Amy said.
When he was 12 weeks old Ben underwent an electronic brain/eye test in the Royal.
"We saw a consultant who told us the test results had come back to say he was blind. We were just so shocked, as we were not prepared to hear that at all."
Amy and her fiancé Martin were told there was no brain response from the eye to the brain.
"But after giving us the results the consultant looked at Ben and she said that she was 100% sure that he could see something."
Ben, who is now 21 weeks old, was then diagnosed with CVI – cortical visual impairment – but needed the MRI brain scan in order to give a proper diagnosis.
"Our heads were just swimming with the information and then we were told it could take up to a year to be seen."
The 26-year-old has contacted private clinics to carry out the scan.
But they cannot offer Ben the procedure as he has to undergo a general anaesthetic.
"We can't even pay privately for this service. I am not happy at the long wait ahead and the not knowing in the meantime," she added.
The RVH for Sick Children is the only specialist children's hospital in the UK that doesn't have an MRI scanner.
It is used to speed up the diagnoses of serious illnesses such as cancer.
This was despite a three-year fundraising appeal to buy a scanner for the Children's Hospital spearheaded by charities and the public. It was heralded a success when it raised £2m, and the Department of Health has pledged to inject a further £2.75m into the project.
But the scanner won't be installed until March next year.
A spokeswoman for the Belfast Trust said it had spoken directly to the family and hoped it could offer an appointment sooner "should a cancellation occur".
"This patient will not have to wait for a year for an MRI scan," the spokeswoman said.
"The longest waiting time for a child requiring an MRI scan under general anaesthetic is 26 weeks for a routine scan.
"We acknowledge that the current wait is not acceptable, however the trust is doing all it can to reduce waiting times including running regular additional weekend sessions."
The trust confirmed funding for the Children's MRI scanner had been secured, and it will be commissioned and installed in early 2015.