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Baby Isaac & Evie's bronchiolitis story

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 twins - a boy named Isaac and a girl called Evie. They were both three weeks old when  they were first affected by bronchiolitis (September 2013). They were born at 37 weeks through a planned C-section. Claire also has an older child,  Elijah, who is four and a half.

Claire and her husband Shaun initially contacted 111 and were seen by an out-of-hours doctor when their children became unwell. They appeared off their milk and a little congested, but otherwise they didn't seem to be too poorly. Claire and Shaun were advised to monitor the babies in case they got worse and the GP gave them a checklist of things to consider which included checking for a fever and reduced feeding.

The following day, the health visitor came to see the family for a routine appointment. She confirmed what the GP had said and clarified that they should keep an eye on the babies in case they developed a temperature. As she left she did also remind Claire about following her gut instinct and calling 999 if necessary. While the babies didn't have a temperature or any of the other symptoms of bronchiolitis, Isaac suddenly became very unwell. Within the space of an hour, he went from being a little unwell to turning blue and was barely responsive. Claire called the GP who demanded that Isaac was taken to hospital by ambulance immediately. Evie was taken by car as the doctor was suspicious that she could be suffering from the same condition. Both babies were seen in their local A&E department and the staff worked tirelessly treating Isaac. Evie also received the care she needed to ensure that she did not end up as poorly as Isaac. A specialist team from another hospital were called in to work on Isaac. After many hours and once he was in a stable enough condition to be moved, they transferred him to the PICU at another hospital. Claire's father stayed with Evie at the local hospital, and her mother remained at home with Claire and Shaun's other child, Elijah. Claire and Shaun both stayed overnight at the hospital with the PICU so they could be with Isaac as much as possible.

It was very difficult having three children separated by illness and even after a number of requests, Isaac and Evie were unable to be accommodated in the same hospital. There were days when Isaac's condition deteriorated and once he remained stable, Claire and Shaun tried each day to  spend a couple of hours with Evie in the local hospital, before going home for a couple of hours to be with Elijah and then heading back to the PICU unit. This had a huge impact on Elijah as he was worried about what was happening and couldn't understand what was going on. He got particularly upset when his parents had to leave again to return to the hospital. Evie stayed in hospital for six days. She received treatment for bronchiolitis which included being on oxygen for five of the days she was admitted. Isaac was ventilated for eight days in PICU as he was so poorly. He remained critically ill for most of this time until suddenly he began to respond to the treatment and started to recover.

Once the doctors were satisfied with Isaac's progress, he was transferred back to the local hospital for a further four days until he was strong enough to go home. Isaac's condition was confirmed as severe bronchiolitis with overwhelming sepsis. It was a very difficult time for the whole family and without the support of close family and friends it would have been near impossible to ensure that all three children received the care they needed. The entire family is incredibly grateful to all the staff involved in the care of Isaac and Evie. It was the quick responses and expertise of the doctors and nurses caring for Isaac that helped to ensure his recovery. Claire and Shaun had never heard of bronchiolitis before, and had received no information on what it was or what caused it until they were in the hospital with Isaac. When they first got to A&E, the doctors told them that it might be bronchiolitis, but didn't explain fully what it was. Another doctor said that in his opinion it may not be bronchiolitis, so there was some confusion before tests confirmed that it was. After the tests came back positive, little detail was given about what this illness was. Claire and Shaun had to look into it themselves to try and get some more information and clarification.

Claire feels very frustrated that they were not made more aware of this illness when they left the maternity ward at the hospital, by community midwives or by the health visitor. Meningitis was mentioned frequently including being given a card explaining the symptoms but RSV and bronchiolitis were not even mentioned. Unfortunately Isaac did not present with all the symptoms of bronchiolitis but had Claire and Shaun received some information about the illness from a healthcare professional then they may have been able to spot the signs sooner.

Claire regrets that she now feels very sensitive towards the twins and says that she never wanted to be the kind of parent who overreacts to small things, but she feels like that is what she now does. She has taken them to the doctors on a few occasions as she has been concerned about them. Claire and Shaun are also worried about the lasting impact of the illness. Isaac appears to have some hearing loss and doctors are currently looking into this and whether bronchiolitis was the cause. Claire and Shaun hope that situations like this could be avoided if parents are more aware of how severe bronchiolitis can be for very young babies especially twins.

It was a terrifying experience but they hope that by sharing this, they might be able to help other parents.

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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