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'Hospital called about my girl's appointment months after she died'


Lorraine Nelson with daughter Millie, four days before she died

Lorraine Nelson with daughter Millie, four days before she died

Lorraine Nelson with daughter Millie, four days before she died

A grieving young mum was horrified when she received a call asking to confirm an appointment for her baby daughter - who died three months ago.

The call to Lorraine Nelson came from Dublin's Temple Street Hospital whose doctors, she claims, sent her baby girl home to die, offering no further aid to little Milllie when she was diagnosed with a rare condition.

Lorraine, from Navan, Co Meath, had to fight for medical help for her daughter who battled the most severe form of Spinal Muscular Atrophy (SMA) Type 1 which causes the wasting of the voluntary muscles and impaired breathing.

Lorraine and her husband Gary refused to give up after doctors at Temple Street advised them to secure palliative care for their precious girl.

With the help of social media and UK parents with SMA Type 1, they were able to contact a respiratory specialist in the UK. Unfortunately, Millie was too weak to travel so he helped to arrange a meeting with his counterpart in Crumlin Hospital.

Millie, who was just three months old, was then able to access a machine to help her breathe.


The little fighter defied the odds and won battle after battle until, sadly, she died suddenly from a non-SMA Type 1-related infection three months ago, at just 16 months old.

Lorraine was just coming to terms with her baby's death when she received the shock call last Friday while where she was being treated for anaemia.

"I was waiting to see the nurse for my next injection when I got the phone call. I was knocked for six and my legs nearly buckled from under me," she said.

"The call was from the respiratory department of Temple Street - the same department that we fought to get Millie care in, only to be told it was not international practice.

"They diagnosed Millie here and sent us home in a taxi, telling us that Millie was dying.

"Without Professor McNally and the care team in Crumlin, we would not have been able to share Millie's first Christmas or first birthday.

"As far as I'm concerned Temple Street washed their hands of Millie when she was a few weeks old and now 17 months later, they want to see her in their clinic - three months after she gained her angel wings.

"A week after Millie's plight appeared in the media last May, I received a letter from Temple Street advising that Millie had been put on a waiting list for respiratory care when it was imperative that she was seen immediately because of her fatal condition.


"I heard nothing else from them in regard to any timeline or appointment for over a year, only to get this phone call out of the blue."

A statement from Temple Street Hospital said they are looking into the "erroneous" phone call.

"In the case of a patient or family making personal information public, this does not relieve the HSE and all HSE-funded hospitals of its due to preserve/uphold patient confidentiality at all times," it added.