Hospital phones mother over appointment date for dead baby

A grieving mother was horrified last week when she received a call asking her to confirm an appointment for her infant daughter - who died three months ago aged 16 months.

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

Ms Nelson, 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 wasting of voluntary muscles and impaired breathing. SMA is the number one genetic killer of infants.

Ms Nelson and her husband Gary refused to give up after doctors at Temple Street advised them to secure palliative care for their daughter.

With the use of social media and help from UK parents also dealing 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 was then able to access a machine to help her breathe. Unfortunately, she died suddenly of a non-SMA Type 1 related infection three months ago at 16 months old.

Ms Nelson was just beginning to deal with her child’s death when she received a phone call last Friday while at her GP’s, where she was being treated for anaemia.

‘Absolutely fuming’

“I’m absolutely fuming. It was the first day I have been properly up on my feet after my stay in hospital and I had actually been feeling a lot better.

“I was sitting in my GP’s 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.

“The call was from the respiratory department of Temple Street - the same department that we fought to get Millie respiratory care, 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 and it was only a matter of time.

“If we had listened to them, Millie would have only lasted a few weeks but Crumlin Children’s Hospital - only a few miles away - gave us the equipment we needed to manage SMA Type 1.

“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 a family,” she said.

A statement from Temple Street Hospital said it is looking into the “erroneous” phone call.

It added: “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 duty to preserve/uphold patient confidentiality at all times.

“A consultant who has treated or is treating a child in Temple Street is, however, always happy to discuss any aspects of a patient’s care directly with the patient (as age appropriate) and/or their family members.”