The parents of a terminally ill baby girl have opposed an application by HSE to the High Court for permission not to resuscitate the child should her condition deteriorate.
Today at the High Court lawyers for the HSE applied for a declaration that it will lawful for medical staff treating the child not to administer CPR and ventilation to her if her condition deteriorates.
The court heard that the parents are objecting to the HSE’s application because they are “hoping for a miracle”.
The eight-month-old child’s mother told the court that she did not want her “rights as a mother taken away” by the HSE in respect of her child’s treatment.
She told High Court President Nicholas Kearns that she is fully aware of her daughter’s condition, and that she “will never reach adulthood”. However she and her husband want to make any decision that effects their child’s life.
By order of the court neither the family at the centre of the application, nor the hospital where the infant is being treated may be identified by the media.
Seeking the order the HSE, represented by Tim O’Leary SC, said the child has a genetic disorder for which there is “no known cure”. During the child’s short life she has suffered from epilepsy, has trouble breathing, has sight and hearing problems and cannot swallow.
Children with this condition do not live beyond their first year, the court heard. The HSE counsel said, following an assessment by expert medical staff, seeking the declaration in the the child’s “best interests”.
Should her condition deteriorate her doctors do not want to see the child’s suffering prolonged by invasive aggressive treatment.
Performing CPR or ventilation, which she has received previous, has caused her pain and distress, counsel said.
Counsel said the child’s parents have taken a different view and want her to have CPR and or ventilation.
The HSE, counsel said, fully appreciates the truly tragic and difficult situation the parents find themselves in. However the HSE say this is not appropriate and have come to the High Court to seek guidance on the matter.
The child’s mother, represented by Mark Harty SC, said the family had concerns about a medical report complied 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 that they wanted CPR and ventilation to be performed on their daughter. She said that she wanted to do everything possible so she can give her child the “care and love she deserves”.
Since her child’s birth she and her husband had been with her 24-7. They fear important decisions concerning their daughter are being taken away from them.
She did not want the HSE to make any decisions in regards to the resuscitation of their child, who she described as a miracle since the day she was born. She accepted that her daughter’s life would be short.
She disputed that the child has suffered as a result of receiving CPR after her condition deteriorated. She said that after a previous intervention her daughter was “smiling” and giggling at people.
She added that while there had been difficulties with the medical staff in relation to the child’s treatment, she said it was nothing personal and that she liked the doctors and nurses.
Mr Justice Kearns adjourned the case to allow an independent medical expert carry out an assessment of the child, said this was a very very difficult and sad situation for the child's family and the medical staff who have been treating her.
In particular he praised the girl’s parents who he said he have been doing everything they possibly can for their daughter.