September 18 2014 Latest news:
Tuesday, August 26, 2014
Phyllisity Ramm was just three weeks old when her mother had her first concerns about her daughter’s breathing.
• People with moderate to severe obstructive sleep apnoea (OSA) will usually need to use a continuous positive airway pressure (CPAP) device.
• This is a small pump that delivers a continuous supply of compressed air to you through a mask that either covers your nose or your nose and mouth.
• The compressed air prevents your throat closing.
• People usually soon get used to it and their symptoms improve significantly.
• CPAP is available on the NHS and is the most effective therapy for treating severe cases of OSA.
• As well as reducing symptoms such as snoring and tiredness, it can also reduce the risk of complications of OSA, such as high blood pressure.
(Information from the NHS website)
From the outside the eight-month-old looks a healthy, bonny baby but when her mother lifts her daughter’s pyjama top she reveals what looks like an ordinary sticking plaster on her tummy.
It is actually a monitor that alarms if Phyllisity’s tummy doesn’t rise and fall for 20 seconds. That is because just a few weeks after the newborn tot came back to the family home in Dereham she began to stop breathing in her sleep.
And through her short life the condition has worsened to a point where Phyllisity suffers episodes of not breathing up to 20 times a night with Mrs Ramm having to perform cardiac resuscitation on her at least once a week.
But while doctors have run tests and agree there are irregularities in her breathing Mrs Ramm, and her husband Michael, are becoming increasingly frustrated that they refuse to prescribe a machine they believe will potentially save their daughter’s life - and give them all a full night’s sleep.
The couple want to trial a CPAP machine (continuous positive airway pressure) which is available on the NHS and is the most effective treatment for obstructive sleep apnoea, or cessation of airflow during sleep, as it prevents the throat from closing.
But it appears that doctors are so far unconvinced that her condition is serious enough - something her parents are fighting to prove.
“I don’t think it is right that a mother should have to perform CPR on her own baby,” said Mrs Ramm, 26. “She goes limp and blue within seconds and I have to pick her up straight away, and if she doesn’t start breathing on her own I have to intervene. She has been blue-lighted up to hospital in an ambulance so many times I have lost count. It is frightening for the whole family. 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 also have a rota system in place so that one of them is awake around the clock to keep watch over their daughter. Mrs Ramm has a few hours sleep in the evening when her husband comes home from his job at the Norwich & Peterborough Building Society in Dereham, then when he goes to bed she gets up and stays awake all night until she can grab another couple of hours in the morning before Mr Ramm goes back to work.
A scan has revealed a hole in Phyllisity’s heart and one of the valves around her heart has not completely formed which further confirms her parents’ belief that a breathing aid is needed sooner rather than later.
A CPAP machine was mentioned in passing by a doctor as a possible solution and, as Mrs Ramm has experience of working in healthcare with the machines, she was keen to give it a go but has just hit a brick wall in her attempts to be given a trial.
“I have even been made to feel I am making her episodes up,” she said. “I have just felt so deflated at times. We have even saved up and offered to buy the machine ourselves but it has to be prescribed so that is not an option either. It seems we are going round in circles. It must be worth a try for all our sakes.”
“We are literally ships that pass in the night,” she said. “Every day is a battle.”
Mrs Ramm is hoping that highlighting her daughter’s condition will raise awareness, get support from other sufferers, and strengthen her case for a CPAP trial.
She is gathering support from around the world on Twitter and Facebook and even the band The Hoosiers are now 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. 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 forever.
“She 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 spokesman for the Norfolk and Norwich University Hospital 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.”
• Are you fighting for life-saving treatment? Email firstname.lastname@example.org.