A good local MP

The Herald reports:

The little girl trapped inside her body and trapped inside Starship children’s hospital is celebrating turning 5. But Ana-Carolina’s birthday brings no new hope of escape.

The intractable conflict between her parents and the Auckland District Health Board over the best option for her care means Ana-Carolina remains in Starship’s paediatric intensive care unit, as she has since the age of 5 months.

The best practice advice is that Ana-Carolina should be at home – she cannot move but is healthy and bright, needing a ventilator to breathe that works as well in hospital as it does anywhere else.

Of course she should be at home.

The constants in her life have been her parents Peter Bircham and Elane de Moraes Lobo, who spend almost every hour of the day with their daughter.

But there is another constant – local Epsom MP has emerged as a persistent advocate on the family’s behalf.

He intervened with former health minister Jonathan Coleman which led to former health board chairman Lester Levy creating a special panel to mediate a way for Ana-Carolina to leave. …

In the 30 months since Seymour became involved, he has written dozens of letters, met with the parents for hundreds of hours and – every now and again – simply sits with Ana-Carolina at Starship.

The act of a good local MP. He is making a difference.

The issue is – and isn’t – simple. When Ana-Carolina was 15 months, her parents were told that it was in the girl’s best interest to “allow natural death”.

The discussion created a schism between the parents and the hospital, destroying the trust Bircham and de Moraes Lobo had in the hospital.

Not surprising.

Since Seymour became involved, he says he’s been urged by others in politics to step back from supporting the family because of the demands and time involved.

“On one hand, I’m frustrated we haven’t got a result and got her home. On the other hand, I’m proud I’ve stuck with it.

“You roll as the local MP as the last line of defence. But also, there is something extraordinary happening there. Her transformation from when I first met her from being completely lifeless to having movement in her fingers and eyes – it is possible she regains a lot more movement.”

Bircham and de Moraes Lobo are overjoyed with the change in their daughter – her eye movement now allows her to direct a computer through which she can communicate.

“She understands a lot more than we ever realised,” Bircham says. Along with fingers and eyes, there is toe and eyebrow movement, and speech therapy.

It’s hard to read the story without getting tearful as you imagine how challenging this must have been, but also the joy of making progress.

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