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Parents of a newborn Kylie and Michael Ramm expected to endure sleepless nights.
After putting baby Phyllisity to sleep each night, the couple take it in turns to watch over her, terrified she might stop breathing.
They are not paranoid new parents. They have been scarred by repeatedly having to resuscitate their daughter, who stops breathing 20 times a night.
The eight-month-old has a condition, rare in babies, called obstructive sleep apnoea.
It causes the walls of Phyllisity's throat to relax and narrow while she sleeps, blocking her airway and stopping her breathing.
The exhausted couple are now desperate to get a CPAP (continuous positive airway pressure) machine on the NHS, to help Phyllisity.
It is widely regarded as the most effective treatment for the serious problem, stopping the patient's throat from closing while they sleep.
But the Ramms said they are facing an uphill battle to convince doctors to give them the equipment.
Doctors at the Norfolk and Norwich University Hospital are in the process of performing a series of vital tests to decide on the best course of treatment for the eight-month-old.
The 26-year-old, from Dereham, Norfolk, said: 'I don't think it is right that a mother should have to perform CPR on her own baby.
'She goes limp and blue within seconds and I have to pick her up straightaway – and if she doesn't start breathing on her own I have to intervene.
'Phyllisity has been blue-lighted up to hospital in an ambulance so many times I have lost count.'
Frustrated Mrs Ramm, who is also has a son, Joseph, stressed: 'It is frightening for the whole family.
Phyllisity's parents, Kylie and Michael, take it in turns to stay awake throughout the night to ensure they spot when their daughter stops breathing. They repeatedly have to resuscitate her in the night
'Joseph is only two and he hates the sound of sirens because he thinks they are coming to take his mum and sister away.'
The couple have put a strict rota system in place so that one of them is awake around the clock to watch Phyllisity.
Mrs Ramm has to snatch a few hours sleep in the evening when her husband, 27, gets home from his job at the Norwich & Peterborough Building Society in Dereham.
Then when he goes to bed the mother-of-two gets up and stays awake all night until she can grab another couple of hours in the morning before her husband returns to work.
'We are literally ships that pass in the night,' said Mrs Ramm. 'Every day is a real battle.'
She is hoping that highlighting her daughter's affliction will raise awareness and strengthen her case for a CPAP trial.
The 26-year-old is gathering support from around the world on Twitter and Facebook and even the band The Hoosiers are following Phyllisity's progress.
'We have been battling for eight months to get some answers and make progress with Phyllisity's condition so I can't see how it will hurt to have a CPAP trial,' Mrs Ramm said.
'If that doesn't work at least we will know and we can try something else.
'She is not likely to grow out of it so we can't go on like this for ever.
'Phyllisity is such a happy baby, always smiling and making us laugh.
'We love her so much and just want what's best for all of our children.'
A Norfolk and Norwich University Hospital spokesman said they were carrying out a raft of vital tests on Phyllisity.
He said: 'We are working closely with the family and the regional specialist centre to complete the necessary clinical tests as soon as possible.
'The results will allow us to offer this young patient the best treatment.'
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