Years on waiting list: ‘My son’s in pain; my heart’s broken’

Years on waiting list: ‘My son’s in pain; my heart’s broken’

Christine Terry from Whitechurch said that her son Adam has Marfan syndrome, a genetic disorder that affects the body’s connective tissue. He has been on the waiting list to repair a severe curvature of his spine due to scoliosis for over two and a half years.

THE mother of a 10-year-old boy left in agonising pain from scoliosis has spoken out about the need for corrective surgery to happen as a matter of priority.

Christine Terry from Whitechurch said that her son Adam has Marfan syndrome, a genetic disorder that affects the body’s connective tissue. He has been on the waiting list to repair a severe curvature of his spine due to scoliosis for over two and a half years.

Christine expressed grave concern about the pressure this is placing on his organs.

It comes as a total of 2,775 children are awaiting in-patient treatment at Our Lady’s Children’s Hospital, Crumlin. Some 769 children, including Adam, have been waiting over 18 months to access similar medical care there.

The latest National Treatment Purchase Fund (NTPF) figures show there are more than 907,600 people on some form of NTPF waiting list to be treated or assessed by a consultant.

This marks an increase of 66,167 people since this time last year and a rise of almost 124,000 (16%) since August 2019.

The Irish Hospital Consultants Association warned that there will soon be more than 1m people on NTPF waiting lists. The group also noted a marked increase in the length of time people are waiting, with record numbers of ‘long-waiters’ now on a list for over 18 months. This is before being either assessed by a consultant (192,764) or having in-patient or day case treatment (14,263).

Christine shed light on the effect that surgery delays are having on her family.

“When we were trying to be an average family doing everyday things we could really see how Adam had deteriorated,” she said.

She recalled a holiday in West Cork last month they were forced to cut short.

“When we went away, it was like he had reached the point of no return. There was no joy in being on holiday.

“The first day was wonderful. We swam and snuggled on the beach. However, when the second day arrived, he was in so much pain that he couldn’t leave the mobile home.

“We called in to get a prescription, but the pain was too much and the only option left was to go home, where Adam had his air mattress and could be more comfortable.

“I haven’t put down a summer as difficult as this since he was a baby.”

Nights at home, Christine said, aren’t much better.

“I have to be in the same bedroom as Adam, as he experiences such terrible pain that he has to be with me all the time. “He could need pain relief at any time of the night.

“I rarely get sleep. The little bit I do never feels like proper sleep.”

Christine spoke of the pain of seeing her son unable to go to school.

“I heard the health minister talking about how important it was for kids to return to school. It really struck a chord for me, because that first week Adam was only able to spend an hour in school.

“I was looking at all these beautiful pictures on social media of healthy kids going back to school.

“This should be the norm, but my heart is broken, because my little boy is in so much pain he couldn’t go back to school. He is so exhausted just trying to function during the day.”

The mother of two added that Adam feels left down by the Government, who she said have neglected children in his position. Christine said that a state apology in 20 years’ time won’t be enough.

“I have no doubt that in 20 years’ time Adam and the other children will be getting a public apology. However, by then it won’t mean anything.

“We’ve been told that the money isn’t there, but when Covid hit, they had money to pay for everything.

“I understand that this is a killing virus, but it beggars belief that the same solutions can’t be found for our children.

“There is so much discussion about the long-term effects of long Covid, but the long-terms effects for children suffering from the same condition as Adam is severe damage to their internal organs, which, in some cases, can be irreversible.”

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