Johannesburg - Baby Ashleigh Louw, who was born with part of her heart outside her chest, is in a critical condition in intensive care, Chris Hani-Baragwanath Hospital clinical manager Dr Pungie Lingham said late on Thursday.
Lingham said the girl was still under intensive monitoring after she underwent a major operation on January 17 to put her heart back in her chest.
"We must remember Ashleigh was born with a number of abnormalities and she is a very sick baby," he said.
According to SABC radio news the family has asked doctors to stop all efforts to save her life. Doctors however said they would not switch off her life support machines, but allow nature to take its course.
Body swollen
Her aunt Olivia reportedly said doctors informed the family that Ashleigh's body was swollen to the point where they could no longer use drips on her. She said doctors had been giving her oral medication only.
Louw told the broadcaster that as much as the family was devastated, they were satisfied with the hard work done by doctors.
Ashleigh was born on January 9 with her heart outside her chest, covered by a thin layer of skin.
Ashleigh's condition is known as Pentallogy of Cantrell, an extremely rare congenital abnormality affecting about one in a million babies. The condition consists of five associated abnormalities, including structural abnormalities of the heart and defects in the covering of the heart, the diaphragm, sternum (breastbone) and of the anterior abdominal wall.
According to academic literature, she has a 50% chance of survival.
Professor Sithembiso Velaphi, head of the Chris Hani-Baragwanath Hospital's neo-natal unit, however said it was hard to tell the baby's chance of survival.
"If the baby had only one defect, we would be able to tell what her chances are, but this baby has a number of defects and therefore it is difficult to tell."
The baby is in a high-care neo-natal unit and on an oxygen machine.
Rare condition
Although Ashleigh's condition was rare, it was not the first in South Africa.
He said the hospital had sought expert opinion from specialists, paediatric cardiologists and the department of paediatric surgery.
An expert, Dr Raymond Billa explained the team would carry out the operation in phases.
The first phase would be to close the defects, which meant the team would not operate on the heart. That would be done in a different operation.
"This is quite a complicated operation and it has to be done in phases."
Asheigh's story made national headlines in January, with support and prayers pouring in from all parts of the country.
