Family of teen who died from rare disease calls for infants to be tested
THE family of a teenage girl who died from a rare intestinal disease that was never diagnosed has called for greater testing for the condition among infants to ensure others do not suffer the same fate.
Ann Jordan (14) collapsed at her Killala home in Co Mayo on April 20, 2012. The young animal lover had suffered with Hirschsprung's disease since birth but, because it was never diagnosed, had not received an operation to relieve the condition.
The illness affects the large intestine and causes serious problems with passing waste matter. Children who have Hirschsprung's disease require surgery to remove the area of the large intestine that has no nerve cells. In most cases, surgery is done within the first months after birth.
However, for 14 years Ann continued to be treated for chronic constipation with laxatives and suppositories.
Hirschsprung's disease, which affects one in 5,000 births, is not currently tested for in Ireland.
Ann's inquest earlier this year heard from medical staff at Mayo General Hospital that she was being treated "conservatively" for chronic constipation as that course of action seemed to be working. However, her family questioned this, insisting that Ann would face fresh problems within days of discharge.
Her aunt, Mary Molloy, told how despite not attending hospital since 2005, the young girl had continued to visit outpatient and GP facilities until 2009, seeking relief from the painful condition. However, her inquest heard that she gave up on doctors because she felt she was not being listened to.
"At the inquest it was suggested that Ann tried to keep the condition from her family because she was embarrassed but that wasn't the case. Her mum Bernadette helped her with all the suppositories.
"She didn't return to the hospital since 2005 because she wasn't an emergency admission, but she was being treated as an outpatient and by GPs for years after that.
"She was looking for help, she was presenting at doctors. They were treating her for constipation but the underlying problem, the Hirschsprung's disease, was ravaging her life. The real issue was the failure to test Ann as a child for the condition," added her aunt.
The inquest heard how Ann had attended a local GP service on 27 occasions between 2004 and 2009. An appointment was made by Ann's father Robin for his daughter to attend the GP on April 20 last year after she had been unwell for a number of weeks. Tragically she died that day.
Despite her ongoing pain and discomfort, Mary told how her niece was always "a cheerful child" who loved her animals, vegetable garden and painting.
"She had a lovely wide smile and generous personality. She loved where she lived, she planted her own garden and won prizes for the jams she made. She loved animals, she had a pony and four cats; Ann wanted to be a vet," Mary said.
Ann's father Robin, who suffered from a heart condition, died last October.
His sister Mary believes his condition was impacted by the tragic death of his daughter.
"He never got over it, he died of a broken heart," she said.
Mary also told how the family had been protected from a Facebook post stating that Ann had taken her own life. However, she stressed that the post had been placed by a friend of the teen's who had truly feared she had died by suicide.
"It wasn't malicious, it was done out of worry. There had been a few suicides locally and the message was posted by a friend of Ann's who feared the worst. Her death was so sudden people were in shock," she said.
Ann's heartbroken classmates at St Patrick's College, Lacken Cross, erected a tree and bench in her honour.
"Despite all her discomfort Ann loved her life. She loved her school and friends and hardly missed a day over the years. She would have loved the tree," added Mary.