Parents of terminally ill baby battle HSE bid for 'do not resuscitate' order
THE parents of a terminally ill baby girl have opposed a High Court application by the HSE for permission not to resuscitate the eight-month-old should her condition deteriorate.
Yesterday the HSE applied for a declaration that it will be lawful for medical staff treating the girl not to administer cardiopulmonary resuscitation (CPR) and ventilation if her condition deteriorates.
The court heard the child's parents are opposed to the HSE's application because they are "hoping for a miracle".
The baby's mother told High Court President Mr Justice Nicholas Kearns she did not want her "rights as a mother taken away" by the HSE in relation to her child's treatment.
Describing her daughter as a "miracle from God", the mother said she was fully aware of her condition, and that she "will never reach adulthood".
However, she and her husband want to make any decision that affects their child's life.
By order of the court the family or the hospital where the infant is being treated cannot be identified.
Seeking the order, Tim O'Leary SC, for the HSE, said the child had a genetic disorder for which there was "no known cure".
During the child's short life she had suffered from epilepsy, had trouble breathing, had sight and hearing problems and could not swallow.
Children with this condition do not live beyond their first year, the court heard.
Counsel said that, following an assessment by expert medical staff, the HSE was seeking the declaration not to resuscitate because it was in the child's "best interests".
Should she deteriorate, her doctors did not want to see the child's suffering prolonged by invasive aggressive treatment.
Performing CPR or ventilation, which she had received previously, had caused her pain and distress, counsel said.
Counsel said the child's parents had taken a different view and wanted her to have CPR and/or ventilation.
The HSE, counsel said, fully appreciated the truly tragic and difficult situation the parents found themselves in.
However, the HSE said CPR and ventilation at this stage was not appropriate and had asked the High Court for guidance on the matter.
The child's mother, represented by Mark Harty SC, said the family had concerns about a medical report compiled about their daughter. Counsel asked that the court order a further assessment of the child by an independent medical expert be carried out.
The child's mother told the court she wanted CPR and ventilation to be performed on her daughter.
She wanted to do everything possible so she could give her child the "care and love she deserves".
Since her child's birth she and her husband had been with her 24-7.
"Our daughter is our life," she said.
She said they feared important decisions concerning their daughter were being taken away from her and her husband.
Such decisions were for them and not the HSE to make, she said.
She did not want the HSE to make any decisions in regards to the resuscitation of their child since the day she was born.
She disputed that the child had suffered as a result of receiving CPR.
She said that after a previous intervention her daughter was "smiling" and "giggling and laughing".
While there had been difficulties with the medical staff in relation to the child's treatment, it was nothing personal and that she personally liked the doctors and nurses treating her daughter.
Mr Justice Kearns adjourned the case to allow an independent medical expert to carry out an assessment of the child.
He said this was "a very, very difficult" and "sad situation" for the child's family and the medical staff who have been treating her.
The judge praised the girl's parents who he said had done everything they possibly could for their daughter.
The child is to receive CPR and or ventilation, should the need arise and if her parents wish her to have it, between now and the time the matter returns before the court.