By REBECCA WALSH and RENEE KIRIONA
Surgeons yesterday spent hours working on the two babies who have become the faces of the fight against the deadly meningoccocal disease.
Seven-month-old Charlotte Cleverley-Bisman, who has already lost her lower arms and legs, came out of surgery at the Starship children's hospital in Auckland without needing more tissue amputated.
But surgeons worked for six hours removing 10-month-old Sakiusa "Junior" Uluvula's right arm to the elbow and both his legs to the knee.
The Mangere boy had already this week lost his right hand, right foot, half his left foot and the tip of his nose.
He may yet lose his left hand and ears.
His mother, Tima Uluvula, said her family were barely hanging on.
"We don't like to think of next week, next month or next year. Our son is barely living each day," she said.
"Now and again he opens his eyes but there's no reaction. I just hope he knows on the inside that we are there for him."
Junior's healthy twin brother, Nasoni, who was at the hospital last night, was also showing signs of distress, Mrs Uluvula said.
"Nasoni isn't as playful as he usually is and he isn't eating either. I think he knows something is wrong with his brother.
"Right now we are asking God to decide what's right for Sakiusa. If he needs to go then he needs to go, but if his purpose in this world hasn't been fulfilled, then we ask that he stay."
Meanwhile, Charlotte will have more surgery on Tuesday to move some thigh muscle over the stump of her right knee.
If that is successful it is unlikely she will need to have more of her limbs amputated.
The Waiheke Island girl's father, Perry Bisman, said yesterday's result was a much better outcome than expected.
"I could have just about jumped in the surgeon's arms when he told me that."
Surgeons had removed dead tissue the size of a 50c piece from her right knee and a 10c-sized piece from her left elbow.
Mr Bisman said the family had their fingers crossed for Tuesday's operation, which would also involve taking skin from her back to graft on to her amputated limbs.
"We feel a sense of relief but that could change on Tuesday. They may say the infection is worse than they thought and we could be putting off the inevitable."
Mr Bisman said Charlotte had managed a smile earlier in the week but was getting apprehensive every time she was wheeled down the corridor for surgery.
"She was okay but her eyes were very wide and alert and she was watching everyone in the room."
Plastic surgeon Tristan de Chalain said children who lost limbs to meningococcal disease did surprisingly well in the long term.
"An eight or nine-month-old baby has never learned to walk. They are going to start learning with prosthetics. For them this is the way they are, that's natural."
Mr de Chalain, who has operated on Junior, said surgery to amputate limbs was extremely stressful and depressing for surgical staff.
"There are few cases that leave you feeling quite as shattered emotionally as having to go and cut tissue off a baby. We didn't train to do that ... We do reconstructive surgery," he said.
"You are constantly saying to yourself the reason you are doing it is to get this person healthy and to get them to recover from the injury."
Mr de Chalain said losing hands was particularly difficult.
The roll-out of the meningococcal vaccine will begin in Counties Manukau and some East Auckland suburbs on July 19.
* For more information about the vaccination programme, visit the Ministry of Health's Immunisation site or phone 0800-203-090.