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Baby Joseph & Baby Oscar

In most cases bronchiolitis is not a severe illness however some babies will need hospital care.  These are the stories of parents whose children have had severe cases of bronchiolitis.  They have chosen to share their story to help other parents understand more about bronchiolitis and how serious it can sometimes be.

Claire has 3 year old twins boys, as well as three other children. Her twins, Oscar and Joseph, were born prematurely at 32 weeks and four days and were six months old they when they were first affected by bronchiolitis. Both boys were admitted to hospital and were hospitalised from the Wednesday to the following Monday. The second twin, Joseph, was affected more severely and at one stage Claire was told that he might have to be ventilated and sent to London, being separated from Oscar.

"When the other twin was brought into hospital by his father, he was admitted on the spot. My partner had no idea he was so ill, and he and the other children had to witness him being put on oxygen and fed through a tube. It was five days of hell for us all."

Claire was not given any information about bronchiolitis or RSV before her boys were hospitalised. When the boys were released from special care, she was informed that they were at risk but was given no information about what that risk was; there was an assumption that they would know what the risk referred to. When the first baby was admitted, he was not swabbed for RSV as his symptoms were not as severe. The second baby was swabbed but Claire was not told the results initially, and when she was eventually told at their 9 month check up, the doctors said that it was not RSV but did not give any other details.

"We were told they were at risk, but not what for - it was assumed we knew what it was.  It has been horrific - it happened so quickly, and we did not have an understanding of how poorly the twins were."

"There was a general lack of information. Parents should be advised that if they spot a chest recession, they should take their children to A&E immediately. We were never told to look out for chest recession, we didn't know what it was."

Joseph continues to have long-term issues and Claire believes he is probably going to be diagnosed as asthmatic. She has been told that as a direct result of the bronchiolitis, any cold that he gets will probably go to his chest. Claire found the experience extremely difficult and still finds it tough to think about today. She spoke about her fears of being separated from the other children and said it had had a huge emotional impact on the older children as well as herself. She expressed concerns that parents are not given information about the risk factors for things like RSV and bronchiolitis. She also said that it seemed as if GPs don't necessarily have all the information they need to speak about risks and prevention.

"I believe there is a lack of information from GPs as they do not have the relevant experience and don't seem to register prematurity as a huge risk factor for bronchiolitis."

"A lot of people are ignorant about the risks - they think that their child simply has a bad cold and some do not understand that it can be fatal for a premature baby. If people are unwell they should stay away from premature babies until they are totally well."

In most cases bronchiolitis is not a severe illness.  This is a story of a parent whose child has had a severe case of bronchiolitis.  They have chosen to share their story to help other parents understand more about bronchiolitis and how serious it can sometimes be.

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