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Mother 'appalled' as daughter (15) given date for MRI scan in 2029 - when she's 24

Teenager with Down syndrome 'puts up with so much pain'

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‘Stunned’: Carmel Sheehan with her daughter Kerri Dowling near their home in Kilcock, Co Kildare. Photo: Frank McGrath

‘Stunned’: Carmel Sheehan with her daughter Kerri Dowling near their home in Kilcock, Co Kildare. Photo: Frank McGrath

‘Stunned’: Carmel Sheehan with her daughter Kerri Dowling near their home in Kilcock, Co Kildare. Photo: Frank McGrath

A mother of a child with Down syndrome has criticised the HSE, saying she was told her daughter would have to wait until 2029 for an MRI with general anaesthetic.

Carmel Sheehan (39), from Kilcock, Co Kildare, is a full-time carer for her daughter Kerri (15), who has Down syndrome and juvenile arthritis.

If Kerri was to wait until 2029, she would be 24 and no longer in child health services.

On Thursday, the mother took to social media to write to the new Health Minister Stephen Donnelly, after she was told it would be a nine-year wait for the procedure.

Yesterday, Ms Sheehan still hadn't received a response.

She wrote: "@DonnellyStephen so I've just been on to Crumlin Hospital wondering when my daughter's MRI will be done, which we had a date for (August) pre Covid... To be told our new date is 2029!!!!

"This better be addressed ASAP. There is no way I will stand for this, no way."

Ms Sheehan told the Irish Independent Kerri takes the drug Humira to help with the pain associated with arthritis.

But this medication can cause serious side-effects, including cancer, she said.

Kerri has to be regularly monitored with blood tests to ensure her health isn't negatively affected.

She was also meant to undergo MRIs every six to nine months, to help monitor the drug, Ms Sheehan said.

"The drug is really important for Kerri, it controls the arthritis," Ms Sheehan said.

"She's meant to get an MRI to see if the drug is working or not. She's been on it since last September. And we don't know if it's working, or not.

"Kerri is non verbal and puts up with so much pain, we need this MRI to know if the drug is working because she can't tell me.

"We were told in January the MRI would take place in August.

"I totally understood a bit of a delay was likely, due to Covid-19, but a nine-year wait.

"It's appalling. I am actually stunned."

Children with Down syndrome are at an increased risk of developing arthritis and Ms Sheehan said the general anaesthetic was a necessity for Kerri, as she could not cope with the procedure unless she was put in a sleep-like state.

"It's a mess, we have two paediatric rheumatologists in Ireland, the lowest rate in Europe; we need six for a country our size," Ms Sheehan said.

"There's no full-time pain consultant specialist in Crumlin. If Kerri is in pain, I've no one to refer her to.

"It's a case of she has to just stay in pain. We were seen in January and Kerri was assessed.

"They suspected the arthritis was more in her joints than they'd previously thought.

"I asked for a date for the MRI and they told me it would be around nine months, so that should have been the end of August.

"I couldn't believe it when I rang Crumlin on Thursday and was told it would be 2029.

"I couldn't believe my ears. I got off the phone and rang the MRI section, they repeated it - 2029.

"Kerri is 15 now, so she won't be in Crumlin then - she'll be an adult. In the meantime I'm expected to pump the drugs into her without knowing if they are working.

"The drugs suppress her immune system, so she picks up colds or viruses very easily. Right now during the pandemic, she can't leave the house."

A spokesman for Children's Health Ireland (CHI) said: "CHI regrets the cancellation of any in-patient and day case procedure that patients and their families endure.

"CHI is working closely with the HSE in relation to planning and delivering care in the new normal and in the context of the overall service continuity plan for the health system.

"CHI cannot comment on individual cases. Maintaining a client's confidentiality is an ethical requirement for CHI.

"When a client or family makes personal information public, this does not relieve the hospital of its duty to preserve/uphold client confidentiality at all times."

Meanwhile, the Irish Independent also asked the Department of Health for a response and mentioned the mother's social media message to Mr Donnelly.

"The minister is not in a position to comment on individual cases," a spokeswoman said.

Ms Sheehan added that she believed children with special needs were discriminated against and she was angered that €1.7bn was being ploughed into the new National Children's Hospital.

"I don't know when Kerri is in pain, her pain threshold is so high but I sometimes see her biting and I think it's a sign she's in pain," Ms Sheehan said.

"I'm appalled at this. We need a dedicated consultant for children with Down syndrome and a rheumatologist, and I'm sure that would reduce any backlog."

Irish Independent