Parents of terminally ill baby want to bring her home

The parents of a terminally ill baby girl who is at the centre of a High Court dispute over whether or not a hospital should resuscitate her if her condition deteriorates want to bring her home.

The nine month old child has a rare disorder in which cells affecting every part of her body run out of energy. Infant sufferers usually die within 12 months from heart failure and there is no cure, the court heard.

The HSE has asked the High Court to allow the hospital treating her not to resuscitate her should she have such a “cardio pulmonary event”.  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 her ribs.

The parents, who were in court and were described as “100 per cent dedicated” to their baby, oppose the non-resuscitation application and the child’s mother told doctors and the court she was hoping for a miracle.

Today, 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 a matter "of great importance to everybody."

Earlier, 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 and 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 energy in the body’s cells and means she has trouble breathing, has sight and hearing problems and cannot swallow.

A consultant paediatrician said arranging for the child to be brought home would take a significant amount of planning and  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 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.

In almost 30 yearsworking in this area, it had always been difficult as a doctor to accept one cannot do anything for a patient and that is followed by moving to palliative or comfort care, the witness said.

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 supported an early discharge home of the baby.