My Story - Baby Lucy

Sarah has a daughter called Lucy who is 17 months old, as well as two older children, Iona and Alex, who are five and three years old, respectively. They live in Burghfield, in Berkshire.

Sarah's daughter Lucy was born at 32 weeks, weighing just three pounds seven ounces. Lucy spent 17 days in special care after she was born, before she was discharged weighing three pounds 12 ounces. When Lucy was just six weeks old and had been at home for only about three weeks, she contracted bronchiolitis. This was in December 2012.

When Lucy was six weeks old, her sister and brother had both had slightly runny noses and coughs. A few days later, Lucy became unwell. At first it wasn't that obvious that she was seriously unwell, as she often struggled a bit to breathe because she was so small. However, Sarah was concerned with how Lucy looked so took her to the local GP practice. Lucy was seen by a GP Sarah was not familiar with, who gave Lucy a brief look over before saying that she was fine and her chest sounded fine. However, Sarah took a photo of Lucy in the waiting room, where her skin was clearly a grey blue colour, which would occasionally get better, before turning the same shade again. The GP told Sarah to take Lucy home, but to bring her back in the following day if she was still worried.

Sarah carried on with the rest of the day, picking up her other children from school and waiting for her husband to come home. However, in the early evening there was a power cut and so she had to go round to a friend's house with her children until her husband came home. When Sarah arrived at her friend's house, she gave her friend Lucy to hold while she sorted out her other children. Her friend suddenly started to panic, as she said it looked like Lucy was not breathing. Sarah said that this had happened before and that it sometimes seemed like Lucy forgot to breathe, but then she began breathing again.

Sarah's husband soon arrived to pick her and the children up and take them home. When they returned and put Lucy in her cot, they noticed she had completely stopped breathing and she was just staring at the ceiling. Sarah immediately called for an ambulance, which arrived shortly after a paramedic responder. At this point they had another power cut so Sarah had to wrap Lucy in a blanket and take her to the ambulance. While Sarah felt relieved that Lucy would receive treatment and oxygen, it quickly became apparent that the ambulance's equipment was not small enough for Lucy as she was such a tiny baby. They had to get to hospital as quickly as possible, with Sarah holding Lucy in her lap with no clothes on, so they could look at her chest to see if she was breathing. As this was in December, Sarah was worried that this would make Lucy worse but there was no alternative.

When Lucy and Sarah arrived in accident and emergency at their local hospital, they encountered the same problem that none of their equipment was small enough for Lucy. The team working on Lucy had to call the special care unit who rushed down with equipment. At this point Sarah started to feel some relief, as she knew some of the team as this was the same unit that had treated Lucy when she was born. Lucy was ventilated and stabilised fairly quickly.

Following this, Lucy was transferred to a specialist hospital further away to receive more treatment. At first there had been a debate as to whether she would be transferred, as the specialist hospital said she weighed less than 2kg, and that they would not take her at this weight. However, as she could not receive the appropriate care at the local hospital, they agreed for her to be transferred. Lucy spent the next ten days in hospital, before doctors decided that she was well enough to be sent home.

Up until this point, Sarah had not been given any information on bronchiolitis or respiratory syncytial virus (RSV). She had heard of bronchiolitis before but knew nothing at all about RSV infection, the causes or how it can be prevented. The only time she had heard a reference to RSV was when Lucy was about to be discharged from special care shortly after she was born. Sarah had heard two nurses going through a checklist and one of them mentioned RSV.

Sarah is angry that she was not given any information on bronchiolitis and RSV and was not told how these illnesses could be prevented or what to look out for, even after Lucy was transferred back to the local hospital. Since Lucy returned home, Sarah paid for all of her family members who would be coming into contact with Lucy to receive CPR training as she was so worried about what might happen.

Since Lucy first had bronchiolitis in 2012, she contracted it again twice this winter. Now Sarah is more aware what to look out for and has also talked to other parents online who have been through similar experiences. A parent she met online shared videos of her children having chest recessions, which Sarah found useful and has since shared with other friends and family.

Sarah now feels very protective over Lucy, and feels that her relationship with her is different to that with her older children, partly as a result of the bronchiolitis Lucy had. Sarah is also concerned about the impact on her other children as her older daughter, Iona, feels guilty that she may have made Lucy ill. This is clearly distressing for both Sarah and Iona.

"I feel like I can only just talk about this as it was so difficult to go through, but more parents need to be made aware of bronchiolitis and RSV and what can happen"

"I received no information at all. Absolutely nothing. When this is such a big issue and can be prevented, parents should be given information"

"GPs should be more aware of what to look out for and should have the training, skills and equipment to carry out certain tests like checking oxygen levels, rather than sending patients to A&E for this - this could highlight a problem before it escalates"

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.

Disclaimer

This parent story (or 'case study') contains general information and is provided for guidance only. It does not constitute medical advice relating to a specific medical matter. AbbVie makes no warranties, representations or undertakings about the content of each parent story, including the quality and accuracy of it. You should not act upon the information contained in this parent story unless you have obtained professional medical advice in relation to the specific situation.  You are strongly advised to consult a medical professional in relation to the matters contained in this parent story. The views and opinions expressed in this parent story are the views and opinions of the featured parent only and do not reflect the views of AbbVie.



AXSYN141215e - 18 August 2014

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