Why did one of these twins have to DIE before their cough was taken seriously?

Why did one of these twins have to DIE before their cough was taken seriously?

http://www.dailymail.co.uk/health/article-2144437/Why-did-twins-die-cough-taken-seriously.html#ixzz1uvvbMZFd

By FRANCES CHILDS
PUBLISHED: 01:26, 15 May 2012 | UPDATED: 01:28, 15 May 2012

      The sound of her husband’s anguished voice told Hazel McCreight that something was dreadfully wrong. ‘I suddenly heard him crying: “Oh no, Siena, no,” over and over again,’ Hazel, 42, says quietly as she recalls that heartbreaking September morning four years ago. Her husband Jason, 40, had got up at 6am as usual, ready for the commute from Surrey into London, where he works as a director for Deloitte, the financial services giant. He always went into the children’s rooms before he left,’ says Hazel. But while her twin, Lucas, was sleeping soundly, 11-month-old Siena was lying still and unresponsive in her cot.‘Jason rushed with Siena into the bedroom. I was screaming her name and the noise woke our elder daughter, Serena. 

      'Incredibly, even though she was only 14, she performed mouth-to-mouth on her little sister until the ambulance arrived. I was in shock.‘I just kept thinking: “My baby will be all right, she’ll come back to us,”’ Hazel sobs as she recounts the terrible day. 

Siena died just 11 days short of her first birthday — her death was recorded as sudden infant death from asthma, after an autopsy clearly showed asthma damage in her tiny airways.

What makes her story even more distressing is that the warning signs were missed — despite repeated hospital visits during Siena’s short life, and her parents alerting the doctors to their concern that Siena had asthma. Both Hazel and Jason are asthmatic, and, aware that the condition can run in families, one of their biggest fears was that their twins might have inherited the condition. 

Siena (pictured with twin brother Lucas) died just 11 days short of her first birthday. The warning signs were missed - despite repeated hospital visits

    Hazel has had ‘chronic’ asthma since infancy, and uses inhalers every day — she’s been hospitalised with it more than 20 times. I was terribly concerned about my children developing it, and tried to do everything possible to protect them from it. 'We even moved from the city to the countryside where the air is purer,’ she says. Although elder daughter Serena doesn’t have the condition, alarm bells rang when the twins developed bronchiolitis at six months old.

     A common childhood virus, bronchiolitis causes inflammation of the small airways in the lungs. It usually lasts for a week to ten days, but the infection seemed to linger in the twins, and triggered chesty coughs. Concerned about their coughs and wheezing, Hazel took Siena and Lucas to A&E, but she was assured there was nothing to be unduly concerned about and the family was sent home. 

Hazel McCreight has had 'chronic' asthma since infancy, and uses inhalers every day - she's been hospitalised with it more than 20 time

    However, the illness marked the beginning of six months of hospital visits, as often as once a month, as the twins developed constant chest infections. Hazel was sure her babies were asthmatic, but the hospital doctors disagreed. ‘We were always told that lots of children have coughs and wheezes. Despite my family history, doctors wouldn’t diagnose asthma. 'They told me they didn’t do this in children under four.’ On the evening before she died, Siena had a very runny nose but seemed her usual happy self. Hazel gave her some Calpol and put her to bed as normal. She awoke once in the night; Hazel cuddled her and put her back down to sleep.

    At some point during the night Siena lost consciousness — she wasn’t breathing when Jason found her, and although frantic efforts were made to revive her, she was pronounced dead at the Royal Surrey Hospital later that morning. ‘We said goodbye in the chapel of rest. Siena looked perfect and peaceful. 'We were all with her, and for a few precious minutes, as I held my beautiful baby girl in my arms, we were just a normal family again,’ Hazel says quietly. But just two nights after Siena’s death, tragedy nearly struck the family again. Lucas developed a cold similar to the one Siena had had just before her death. I rushed him into hospital and insisted he be admitted,’ says Hazel.During the night, Lucas’s oxygen levels were monitored. ‘In the early hours they dropped to below 50 per cent. Alarms started going off, there was pandemonium and he was fitted with an oxygen mask. 

    ‘I think that’s what happened to Siena, but we didn’t have the medication needed to keep her alive,’ Hazel recounts.‘The doctors diagnosed Lucas with asthma. If Siena’s asthma had been recognised  and treated properly, she would probably still be with us.’So why did the McCreights need to lose one child before their concerns were taken seriously? The answer lies partly in the complex nature of the condition, say experts. ‘There is no easy test for asthma in toddlers,’ explains Professor Andrew Bush, a specialist in paediatric respirology at the Royal Brompton ; Harefield Hospital, London. 

    ‘Instead, it’s a set of symptoms and doctors have to make a difficult judgment call as to whether a child has asthma or is suffering from a virus and bad cough,’ he explains.

Pre-school children, he says, are difficult to diagnose because their lungs aren’t strong enough to do the breathing and lung function tests that help determine asthma in older children and adults. They don’t have the lung capacity to blow into the tube that measures their peak air flow — children can usually use this equipment from the age of six. He adds: ‘Little children often have chesty coughs, but that doesn’t mean they are asthmatic. And I wouldn’t want to give a baby steroids, the medication used for asthma, unnecessarily, as these can have serious side-effects. 

    'However, coughing, wheezing, and breathlessness are the main symptoms, and alarm bells should ring if a child has a persistent cough but no runny nose or temperature.’ It’s not only in children that the condition is missed. Campaigners warn that asthma is both under-diagnosed and under-treated in adults, sometimes with fatal results. The condition causes the muscles around the airways to tighten, and the lining of the airway to become inflamed. The combined effect causes the airway to narrow, leaving you short of breath. Every day three people die as a result of asthma, says Cher Piddock, a specialist nurse from charity Asthma UK. ‘Doctors may under-diagnose it because it’s a complicated condition,’ she says. ‘Sometimes you’ll have symptoms and sometimes not.
     ‘And children can’t always explain their symptoms. They may say they have a tummy ache when actually they have tightness in the chest.’ Fifty years ago, asthma was rare, but since then there has been a threefold increase in the number of people affected, with 15 per cent of the population suffering from it, including one in 11 children. Experts are divided on the cause of this rise in children. Some have linked it to maternal smoking. However, increasing numbers of adults are now developing it for the first time. Between 2001 and 2004, the number of adults diagnosed with the condition rose by 400,000. ‘The jury is still out on what causes asthma and why the incidence has increased,’ says Dr Andrew Menzies-Gow, a consultant physician at the Royal Brompton and Harefield Hospital. One theory is that modern children live in a very sterile environment as a result of cleaning products and their immune systems cannot fight infections. 

For families such as the McCreights the tragedy is that once diagnosed, the condition can be managed. 

      Treatment involves ‘preventer inhalers’, which contain steroids to reduce inflammation in the airways. These must be taken every day, usually morning and night, to prevent the inflammation from building and triggering an attack. Babies can be given steroid medication through a plastic mask fitted round the nose and mouth, or they may be given a tablet. The other type of inhaler is a reliever inhaler, taken when someone feels ‘wheezy’ — their chest becomes tight and they struggle for breath. These contain a type of medication called a beta-agonist, which instantly relaxes the muscles that have tightened around the airway. But experts warn that both doctors and the wider public are failing to take asthma seriously. ‘There is a tendency for asthmatics, and even for parents of asthmatics, to become desensitised,’ says Cher Piddock. 

      ‘They may ignore persistent coughs or slight breathlessness, not use the preventer inhaler and leave themselves open to a potentially catastrophic attack. Steroids are crucial for preventing asthma attacks. Although Ventolin (beta-agonists) quickly relieves breathlessness when someone has an attack, we want to stop these attacks happening — by using the preventers even when people feel well.’ Hazel McCreight knows how important this medication is — and Lucas now uses a preventer inhaler twice a day, as well as a Ventolin inhaler. 

She adds that his care at the hands of the NHS has been exemplary. ‘We will always love and miss Siena,’ she says quietly. ‘We carry on, but we will never really get over her loss. 

      ‘But if my story can alert other families to the real dangers of asthma, then I can at least glean some comfort from the thought that we might prevent another family having to go through the horror we have suffered.’

Comments (6)
      When I gave a GP a paper with my sons blood test results (we were on holiday few days before that visit, our son got sick again and we had to go and see local doctor, that doctor ran blood test and found infection) he got really angry, he asked how much we had to pay for that blood test, why we came back, also if we came back because we get free service here in UK? I answered that we came back because we live here, at that point i was almost in tears... I was so shocked about what he said to me... I couldn't believe in what just happened... Doctor at surgery finally agreed to have a look at my son and prescribed antibiotics again... (Three weeks later we had to go back because my boy was coughing again...) I am really worried that my son has something more serious... Why can't they run more tests just to make sure if there is nothing more serious that just an infection... It is not normal that my boy is coughing almost constantly... But no one seems to care...-       Leena, Ashford, 15/5/2012 09:05
     I am very sorry for this family, and my daughter was diagnosed at 14 months, 35 years ago. I developed the problem 10 years ago, and to my horror, when I had a major attack the treatment I was given was exactly the same, does that mean that in 25 YEARS treatment for asthma has not gone forward, regarding attacks. Yes the daily prevention is different, and avoiding Ventolin, due to the tachycardia, is beneficial, although sometimes it is not possible, and has to be taken, but for goodness sake, with the number of asthmatics, new treatments should be developed.    - Nieves Chesterton, oxford, 15/5/2012 08:29
     My daughter developed chronic bronchiolitis at just 7 weeks old. My instincts were screaming something wasn't right and I rushed her to the docs who said to prop her up in bed, steam her room. Its not serious enough to warrant hospital. A week later and still no improvement and she was admitted, low oxygen levels, oxygen mask, fed through a tube. On her first night in hospital the medical team realised how poorly she was. A X-ray on her chest showed massive infection in her lungs and she was in high dependency for 4 nights. She has since had wheeze after wheeze and this has been put down to post bronchiolitc. Last week I saw a doctor who said we have to consider asthma. She has an inhaler to use during very wheezy episodes but I'm not sure it actually works. Such a sad story, I really feel for the parents and wish their other child well.               - Kate, Northampton , 15/5/2012 07:28
     A really sad story. I would like to add that even when asthma is diagnosed I don't feel it is managed properly. They just churn out repeat prescriptions year after year with an annual check up with the nurse. My son was on the wrong inhalers for over a year. I think the condition isn't taken seriously enough and parents are left to their own devices.    - Shazza 48, Croydon, 15/5/2012 04:43
     The poor family. This hits close to home since my 10 yr old suffered a major asthma attack in March and almost died. And she had been diagnosed with asthma! Asthma is also in my family and I was so happy that my doctor was a family friend and diagnosed my daughter at 2 yrs old, because it isn't easy to get a doctor to agree at that young of age. Three of my children have it and they all react differently during an attack, so I can understand how hard it it for a doctor to actually step up and give a diagnosis, but wow. I am so sorry this family had to go through this! I'm praying they find peace and healing soon.       - L-A, BC, Canada, 15/5/2012 06:11