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Monday 22 September 2014

Parents of a nine-month-old terminally ill baby girl want to bring her home for 'miracle cure' - court

HSE applied to the High Court for permission not to resuscitate baby if she suffers heart failure

Published 29/07/2014 | 16:19

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The Four Courts in Dublin.
The Four Courts in Dublin.

THE parents of a nine month old terminally ill baby girl at the centre of a High Court case over whether or not a hospital should resuscitate her want to bring her home.

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She has a rare disorder in which cells affecting every part of her body run out of energy and sufferers in infancy usually die within 12 months from heart failure, the court heard.  There is no cure.

The HSE applied to the High Court to allow the hospital she is being treated in not to resuscitate her should she have one of these "cardio pulmonary events".  It is claimed administering  cardiopulmonary resuscitation (CPR) and ventilation was not in her best interests as it would be too invasive, causes great distress and could fracture the baby's ribs.

The parents, who were in court and were described as "100 per cent dedicated" to their baby, had opposed the non-resuscitation application.  The mother told doctors and the court she was hoping for a miracle.

Yesterday, after hearing evidence and reports from a number of doctors, the president of the High Court Mr Justice Nicholas Kearns said he was reserving his decision on the matter which he said was "of great importance to everybody."

Mark Harty SC, for the mother, said the parents now want "above all" to bring their baby home. While the mother did not want invasive CPR, she believed some form of intervention could be given, counsel said. The parents still opposed the HSE's application, he said.

The court heard the baby was first admitted to hospital last November suffering from seizures.

She was diagnosed with mitrochondrial syndrome which affects the energy in the body's cells and means she has trouble breathing, has sight and hearing problems and cannot swallow.

A consultant paediatrician told counsel for the mother that arranging for her to be brought home would take a significant amount of planning. It would involve training members of the family in a number of areas including how to operate an oxygen machine.

There would also be difficulties as the baby would not get the same level of care as she was currently getting in hospital, the consultant said  It could be weeks or even months before arrangements to take her home could be in place.

A consultant  paediatric neurologist told the court CPR was not in the baby's best interests. Her condition has not objectively improved and was at or below the levels she was at when first seen in November.

The consultant said in her 28 years working in this area it had always been difficult as a doctor to accept when they cannot do anything for a patient but what happens is that "we then move on" to palliative or comfort care.

The court also heard a report prepared by an independent consultant appointed on the mother's behalf found the benefits of CPR intervention were hard to identify and he also supported an early discharge home of the baby.

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