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Doctors had told the parents of a Samoan baby born with severe facial deformities that she should be left to die within hours. The couple refused, secretly feeding their daughter in hospital with a plastic syringe, and four months later she lives.
The case quickly attracted supporters, moving the public in the Polynesian island nation of Samoa and in New Zealand to donate NZ$103,000 (£40,000) so that a full medical assessment could be carried out on baby Miracletina to determine her future. But the courage of her parents, Sefulu and Mikaele Nanai, and campaigners was tested again yesterday when the New Zealand authorities denied a visa to the baby girl for medical assistance, arguing that surgery would not help.
Miracletina was born with a malformed nose and mouth that prevent her suckling, a double cleft palate, mis-shapen eyes, no fingers, deformed feet and spina bifida.
After viewing images Tristan de Chalain, a plastic surgeon, told New Zealand television that the child should be properly examined. “She has a significant deformity of the frontonasal area, the area above the nose. This could be a frontonasal dysplasia or it could be a meningocele, where the brain tissue is actually growing through the bone into the area between the eyes,” he said.
The family says that Miracletina has suffered no illnesses and responds to family members. However, Mary Anne Thompson, deputy secretary of the New Zealand Labour Department, said in a statement that medical experts had examined the baby's case and on the basis of their report the visa had been declined.
“Three New Zealand medical specialists, including a paediatrician, a craniofacial surgeon and a plastic and reconstructive surgeon, have all concluded that treatment is not advisable and will not benefit [Miracle] Tina's quality of life,” she said. “They jointly concurred that treatment could not cure Tina's condition and further assessment and surgery had no part to play.”
Travel to New Zealand would offer “false hope and possibly unrealistic expectations”, although Ms Thompson noted that if future medical opinion supported treatment for the child then the department would be “willing to reconsider a visa”.
Campaigners criticised the New Zealand Government for making doctors give clinical judgments based on video footage rather than physical examination.
Their final hope is that a CAT scan performed on Miracletina on Thursday in American Samoa, a US territory southeast of its sister state, will persuade the New Zealand authorities that surgery would help. A result is expected today .
Taufau Gardenia Aukuso, the appeal organiser, said: “We're not going to give up until we know we have done all we can to help baby Miracle. And we're waiting for the scan from American Samoa and ... tomorrow we should know the outcome.”
Ms Aukuso said that if there was no hope then the NZ$103,000 raised would be directed towards the care of Miracletina.
The baby's parents, who live in a village near the Samoan capital of Apia, would not comment on the visa ruling, saying that they were too distressed to speak publicly about their ordeal.
There was some hope that the child could be flown to Auckland's Starship Hospital for treatment, which it has been estimated would cost about NZ$100,000.
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I am saddened by the fact that the NZ authorities did not approve of the visa. They should come down to Samoa and see for themselves how precious she is and experiece what the parents, including the family members, go through every day.
To the government of New Zealand:
You can give visas to thieves, murders, and sex offenders and yet you can not give one simple, in need of help, and desperate for life baby to come and see a specialist in New Zealand. How can you do such a thing? How can you judge the facts of treatment by just looking at photos of the little one? I believe that each and everyone of us has a heart and soul. Miracletina does too and I hope and pray that she will get the treatment that she needs.
With all my Love to Baby Miracle,
Blessing
Silafai F. Konelio, Tacoma, Washington
This is a completely indefensible decision, officialdom at its very worst - and on Christmas Eve too. Shame on the New Zealand government - this family was not asking for any handouts.
Brian S, London, UK
If the chance of surgery gives the parents hope false or real they should be given that opportunity. There are other countries to go to with far more experienced doctors. Shame on NZ.
Steve, Windsor, Canada
The sad part about this whole case is tv3 in New Zealand helped to spread this myth that the child could be treated, they did not get proper medical advice, just showed a dr photo's of the child. Sadly tv3 has done this before. this previous year they faked tests on clothes to sensationalize the results. Then refused to apologize to the public for misleading them. Just goes to show the press can be irresponsible.
Richard, Christchurch,
That's very, very harsh. Surely some surgical intervention would improve her quality of life? - I'm thinking particularly of the cleft palate where closure (or partial closure) would improve her breathing and feeding. No child should be condemned to death on the basis of "facial deformity" or spina bifida. Miracletina's parents and her community are committed to her care, that has to count for something.
This reflects very poorly on the NZ government.
Sarah N., London, UK