My baby daughter, Josephine, died very unexpectedly in December 2002 from the RSV virus.

On Monday 28^th October 2002 my second daughter, Josephine Eve, was born quickly and easily (as far as births go!) at the ABC Watford. I felt complete. I had known I was having another girl since 12 weeks into the pregnancy and all my future plans and thoughts were of myself, my husband, Emily ( then 2 years 3 months) and her baby sister. Josie weighed in at 7.2, exactly the same as Emily, and her apgar was 10/10. She was perfectly healthy, and I was completely relaxed.

Within days the three of us were at various music classes, playgroups and parks. Josie was an ‘easy' baby- sleeping and eating well. Our family had not a care in the world.

A month later I visited the Doctor as Emily had caught a bad cold and cough. She was prescribed antibiotics and improved immediately. I noticed that I was suffering similar symptoms by that week-end. Josie was also `snuffly' and coughing. She became more unsettled at night and was having difficulty breast feeding. The Sunday evening was especially bad and I made the decision to take her to the Doctor on Monday morning. She was just 5 weeks old. My doctor confirmed that she had caught a cold virus and to come back on Wednesday, but to call the surgery if I was worried. Nasal saline drops were prescribed to help clear her nose. Josie then slept for most of Monday. I tried to wake her to feed but she was not hungry. When she eventually did take some breast milk she threw it back up again. That night she could not sleep and my husband and I took turns trying to rock her to sleep in our arms. On the Tuesday morning she still would not feed, and was lethargic and sleepy where as before she had been a very alert new born. I began to worry and called my Doctor who saw Josie before her afternoon appointments. She could immediately see that Josie's condition had deteriorated and arranged for myself and Josie to go to Hemel Hempstead Hospital to be observed. As I was becoming more concerned my Doctor assured me this was normal procedure and that we may need to stay overnight whilst the staff there helped Josie to feed.

Ironically this week was the first time my husband had taken off work since Josie's birth. It was meant to be family time. We now all drove to Hemel Hempstead Hospital. Emily was in day nursery as we had kept her in child care for one day a week since I had stopped work.

A registrar saw us on arrival, and diagnosed Josie with creps - the start of bronchiolitis and the RSV virus. Although I had never heard of either of these illnesses RSV and bronchiolitis is a common cough/ cold virus that affects every child under 2 at some point. It can be critical to premature babies or babies with a heart or lung defect. As Josie did not fall into these categories there was no real cause for alarm, although she was still very ill. She was placed on a drip and my breast milk was fed to her at 2 hourly, and then one hourly intervals. We were given a room on the ward where she was closely monitored. A number of other young babies suffering similar symptoms, and mothers, had the other rooms.

That evening and early Wednesday morning I continued to express my milk and the night nurse would come in at intervals to check on Josie and to give her a drip feed. I now also had the virus along with conjunctivitis and acute exhaustion from lack of sleep. Early that morning the registrar was called in and Josie was removed for a short period of time to be X-rayed. The results (around 6 am) confirmed that one of her lungs had collapsed under the strain of the virus. She was also having difficulty breathing. Her condition was deteriorating as the virus was gaining in strength. The anaesthetists and consultant had already been called . But just before they arrived the nurse on duty slammed on the alarm button by the side of the cot. Josie had stopped breathing. At this point I had been trying to regain some energy by having a cup of tea and toast on the adjacent bed. At the sound of the bleeping alarm I screamed and burst into tears of panic. Suddenly the room was full of people in white and blue coats (who I later found out to be a team of anaesthetists, nurses and a senior paediatric consultant.) Someone screamed ‘get the mother out' and I was bundled into the outer corridor and told to call my husband. I think it was about 8.00 am.

I was given coffee after coffee and waited for my husband to arrive . Emily had been put back in her nursery for the day. My parents were called to drive up from Sussex to collect her. We had no idea what was going to happen. It already felt like we were actors in a play- this wasn't really happening to our family.

Meanwhile the hospital team were trying to stabilise Josie. When I next saw my baby I knew I was living my worst nightmare. She was naked except for her nappy, and lay spread eagled on a large hospital bed. She had the ward to herself and what looked like 15 people in panic around her. She was having different sizes of tubes and needles pushed into various areas of her body, whilst people took turns to ‘bag' her to keep her breathing mechanically.

We were told that the London Intensive Care hospitals were being called. St. Mary's Paddington confirmed they had a spare bed and the ‘rescue' team would be at Hemel within 2 hours.

Richard and Ellie from PICU (St Mary's Paediatric Intensive Care Unit) arrived around 10.30 am and with them came a sense of calm. They took over, but it took nearly 6 hours to move Josie onto their equipment and to try and stabilise her enough for the journey to London. We were told that the next 48 hours would be critical including this journey, and to be prepared for the worse.

Richard, Ellie and Josie travelled in the paediatric ambulance with blue lights blazing. Adrian and I travelled in a London cab not far behind. I was in a state of complete shock. Even now the same style of ambulance will start me crying.

On arrival at St. Mary's we went up to the Children's Intensive Care Ward. It was surprisingly small with only 8 beds. There was a small ‘family' room where we were told to wait until Josie was moved and stabilised on the hospital machines and a specific ventilator. I think it was around 6 pm.

After a couple of hours Richard and Ellie came to talk to us and to explain what medication and machines Josie had been put on. We were introduced to the Intensive care staff and nurse that would be looking after Josie. Their personal nurses never left her bed side. Hotel accommodation was arranged for us nearby. We were told to keep our mobiles on all the time in case of emergency contact. We were ‘told' to go and rest for a few hours and that the consultant would talk to us in the morning.

We were back by Josie's bed side by 6 am Thursday morning after little sleep. We had been and would be living off adrenalin. She looked so peaceful and beautiful. She had always been a fairly chubby baby and had a mass of black hair and tiny rosebud lips. Even when she eventually died in my arms she looked the same- as though she was just sleeping.

We spent most of Thursday and Friday by her bedside. Parental help, for emotional reasons, is advised and I was shown how to wash her face and especially her eyes which also had the conjunctivitis that I had suffered. The nurse or consultant on duty would keep us informed of changes to her care and medication, as the staff tried to keep her stable as the virus took its course. Because the virus had taken such a strong hold of Josie she was tested for all secondary infections like septicaemia, pneumonia and meningitis. It was thought that she may have a secondary infection which was weakening her resilience to the virus. Nothing was found. A consultant from The Royal Brompton Hospital came over and scanned and checked her heart as it was possible that a heart defect could also be the cause. Her heart was found to be perfectly healthy. We were told she was a ‘fighter' as slowly they began to wean her off some of the drugs/antibiotics being pumped into her. By Saturday morning we began to feel we were over the worst. The 48 hour critical period was over, the drugs were being reduced, and Josie was beginning to try and breathe for herself. As the baby in the next door bed was removed to travel back to her local hospital for convalescence I believed we would be next.

It was late afternoon when we left the hospital to buy some ready meals for our evening meal. We had the mobile on but I was using it for most of this time - letting my parents knows that Josie's situation was improving. We returned to St. Mary's. On arrival at the PICU family room the senior registrar on duty and Josie's nurse asked if the other parents would kindly clear the room. I felt complete fear. We were back in a hospital drama. What was happening? Josie was getting better and yet these people looked so serious.

During her routine examination her nurse had noticed that Josie's eyes had stopped reacting to light. This is the first noticeable characteristic of brain damage. Although the machines surrounding Josie can measure most other aspects of Josie's body they cannot measure the brain functioning. The consultant had been called in from home. A CT scan had been ordered but it would take a couple of hours to get Josie ready to be moved down 2 floors, with her equipment, to be scanned. It was now 9.30 pm. Adrian and I sat outside the scan room speechless. I could not believe this was happening - a few hours earlier I was making plans to go home - this was all a mistake - they had to have this wrong.

Back in PICU ward the staff had to stabilise Josie again. The consultant had arrived and carried out the official brain stem tests. I watched whilst they poured freezing cold water into my daughters ears, put a sharp end of tissue into her eye and knocked her knees and elbows with a hammer. I wished for her to react - but there was nothing. However because not all the sedation had left her body we would have to watch these tests being repeated in the morning.

The CT scan results were given to the consultant. It was around midnight when we were taken into a private room with the consultant, and Josie's nurse. The CT scan had been ‘horrific'. At some point the pressure on her brain, caused by Hypoxic ischemia (a lack of blood flow and oxygenation to the brain) had been so great that her brain had started to bleed.

I remember sitting there hand in hand with my husband. I could not even cry. I remember wanting to be strong but thinking no-one should have to go through this. This was the shock and numbness we would both feel for days, weeks, even months after. The shock and numbness that helped us arrange and survive the funeral, Xmas, living generally.

We slept; or rather lay together on a hospital ward bed for the rest of that night. I remember getting dressed on the Sunday morning. I bathed and even put on some make-up. This was the day that I was going to say Goodbye to my daughter and as with the funeral 10 days later I intended to look good and not let her down.

The brain stem tests were repeated. Josie now had no drugs running through her body except morphine in case she could feel some pain. The nurse helped me take a print of her hands and feet and cut some of her hair, whilst we waited for my parents to arrive with Emily.

How do you explain to a 2 1/2 year old that her baby sister is dead? To Emily, at first, Josie was just sleeping on a hospital bed. Later she understood that Josie's body had stopped working and she left that bed to live on a star. But her comments and observations amazed us. More than anything I want Emily to remember Josie, and she does seem to be doing that. In the early days she knew Mummy cried because she missed Josie, but could not understand why we didn't get another baby from a shop! Then she expected to be able to visit Josie on her star and that she does not want other babies to have to go to the stars.

We have pictures of that Sunday - of my husband and I kissing Josie on her hospital bed, of our daughters lying together on the bed and the final pictures of Josie dying in my arms as her oxygen supply was removed. A fighter to the end it took her strong heart 25 minutes to stop beating.

I could go on and on about what it was the like to go home to an empty house full of baby clothes and equipment but without my baby. Having to explain to friends and family what had happened; organising the funeral a week before Xmas; of days, weeks and months of waiting to find out what had really happened. But we still have no answer. After the final meeting with the consultants we were told that they had never experienced this type of death before; that they had had to change various procedures at PICU because of Josie's case; that unfortunately they knew no one I could contact that had been through anything similar; that they had no knowledge that this virus could do this to a healthy baby. Because of this we still cannot accept why this happened to our family - there seems no reason.

I started writing ‘Josie's story' a few months after her death. It was my way of trying to come to terms with what had happened and to release some of my anger and grief. We had a lot of support - family counselling with Emily locally and counselling every 2-3 months with Julia Samuels back at St. Mary's who I cannot speak more highly of. She helped Adrian and I grieve together and when 7 months later I fell pregnant, helped me through the worries of another pregnancy. If asked what helped us the most after her death I would have to say that it was the counselling and meeting other families that had experienced similar tragedy in their lives.

It is now over three years since Josie died. I have another daughter, Sylvie, born in March 2004 and a son, Jack, born in September 2005. Although time has made me more relaxed I am very protective and do worry more than the norm for my three children. If they fall ill, especially with cough/cold like symptoms, I can fall apart. Sylvie had croup this winter and we immediately took her to hospital, even calling an ambulance. We have pictures of Josie around the house and talk about her regularly. Emily continues to talk about her, draw pictures of her and ask questions about her death and where she is. When Jack and Sylvie are old enough we will tell them about their other older sister.

I hope, in time, and when I am ready I will be able to help other families through those ‘dark' days as I was helped. I also hope that I can make mothers/ families aware of a virus that not many have heard of, and yet every child has before the age of two years old. A virus that can kill a healthy baby.

prognosis

• Most children with bronchiolitis make a full recovery. The course of the disease is usually 7-10 days, but a few remain unwell for weeks.
• Hospital admission is required in up to 2% of cases; most of those patients are younger than 6 months.
• Mechanical ventilation is required for 3-7% of admitted patients.
• Mortality rate is 1-2% of all hospitalized patients and 3-4% for patients with underlying cardiac or pulmonary disease.
• Most deaths occur in infants younger than 6 months