Parents of Achill teen urge medics not to dismiss concerns of parents

The parents of an Achill teenager who died from an undiagnosed rare disease have urged doctors to always listen to the concerns of parents and don't assume parents know nothing.

Fourteen-year-old Joseph McGinty from The Valley, Achill died enroute to Mayo University Hospital on September 13, 2021 after suddenly falling ill in his home. The inquest into his death which concluded on Monday recorded an open verdict and found that the medical cause of death was due to 'profound adrenal pathology consistent with Addison's Disease'.

The condition is a rare disorder of the adrenal glands where not enough cortisol and aldosterone are produced and Joseph McGinty was not diagnosed with it before his death.

The evidence in the inquest which took place over three days in July heard that the 14 year old experienced weight loss over the summer of 2021 and his health deteriorated in the weeks before his death.

He was admitted to Mayo University Hospital (MUH) on September 1 and stayed overnight before being discharged. He was admitted again on September 8 for a follow up appointment but was sent home by medical staff despite his mother, Patricia McGinty expressing concerns about his health.

He continued to get sick over the coming days and collapsed in his home in the morning of September 13 and was pronounced dead on his way to hospital.

In his findings, Mr Patrick O'Connor, Coroner for Mayo said it may not have been appropriate for the Achill teenager to be discharged from hospital on September 8 and called for the Paediatric Unit of MUH to be properly resourced.

Speaking to The Mayo News following the inquest, Paul and Patricia McGinty, parents of Joseph said they were pleased with the outcome of the inquest and thanked Mr O'Connor for the compassion and understanding he showed during the inquest.

Paul and Patricia described Joseph as a healthy child who rarely went to the doctor and Patricia said she knew her son was sick when she first brought him to see their GP, Dr Edward King in Achill on August 31, 2021. Dr King told her to bring him to the Emergency Department of MUH the following day and gave her a letter outlining that the medical team carry out an urgent investigation.

In relation to the care their son received at MUH, both Paul and Patricia said that communication between parents and hospital staff needs to be improved and medics need to listen to parents.

“To the HSE I would like to say please listen to the parents if they present themselves and their child to the hospital. Pay attention to the notes the GP gives and if you are not sure follow up with another doctor or check all bloods are done and don't assume that a parent knows nothing. We know our children,” they said.

“When you go in with your child, we know them better than any doctor,” added Patricia. “I knew he was sick because he was rarely sick as a child. When you go into the hospital with your child, listen to us.

“When you cannot figure out what is going on don't just send him home with one diagnosis. If you don't know what is wrong with a child, do a battery of tests. I know it might cost money to do these tests but at the end of the day it might save a life. That is what we feel. I know it is a rare condition but there were tests that could have been done and it can be found quite easily if you look into it.

“I know it will never bring Joe back now but if you are not 100 percent sure consult with another doctor or someone who might know a bit more and not just send them home,” she said.

Paul and Patricia said they now wish to mourn the death of their youngest child along with their three children, Paul, Owen and Margaret. They also wish to thank their solicitor Gareth Bourke and barristers, Michael O'Connor and Rita Kilroy for their support and advice throughout the inquest.

They also wish to thank Garda Martin O'Reilly, Dr Jason Horan and the ambulance crew for being there to help the family on the morning of Joseph's death and to Dr Edward Kind and Dr Bernadette O'Leary 'for their understanding and help through this heart-breaking loss'.

A fundraising event to remember Joseph will take place in Óstan Oileán Acla in Achill this Friday, August 25 at 9pm with music provided by local band Cheers and raffle and spot prizes on the night.