“Even three years down the line I still hate the winter period and RSV season” - Natasha’s RSV Story

When my daughter was born at 32 weeks in 2015, I had no idea RSV existed. Thankfully, as she was spring born, the spring and summer months with a premature baby were kind to us.

Our son was then born five weeks early in Autumn 2018 and discharged from the hospital the next day. At four weeks old (so still only 39 weeks gestation), our baby boy developed a cold – it wasn’t anything major, he just sounded a bit congested and had a little cough. I then noticed he started to pause when breathing every so often. I called the doctors who arranged for our son to be seen at another surgery by a locum doctor.

We explained that he was premature, was rather congested and was pausing in breathing every so often. We were told that “premature babies do that sometimes” or words to that effect. Having had a premature baby before who didn’t do that, the explanation seemed rather strange but I thought maybe I was being over-cautious. The following day he still wasn’t any better and that evening he wouldn’t wake for a feed. When I tried feeding him, he instantly threw it back up.

I rang the doctors the following day (Friday) and was seen at our own doctor’s surgery. The doctor noticed on examination the pauses in breathing and called our nearest hospital. After speaking with a paediatrician, we were asked to take our baby boy to the hospital to be seen in the Paediatric Assessment Unit. They checked him over, swabbed him for RSV and kept us in overnight for monitoring. I’m so thankful that they took that decision as that evening his oxygen monitor kept dipping.

The medical staff came to see him in the early hours of the morning and realised that he needed manual stimulation to encourage him to breathe. He was then moved to HDU, given caffeine and put on CPAP. Whilst I was scared, I was still none the wiser about how bad things were. The nurse then asked how quickly my husband could get to the hospital and the words, “he’s not very well at all” still haunt me to this day.

His oxygen rates still continued to dip and the pauses in breathing were getting longer even with manual stimulation, so the decision was taken to intubate him. I vividly remember asking my husband to take a photo of our son before he was intubated as I believed that would be the last time we’d see him. I still can’t bring myself to look at that photo.

Our local hospital doesn’t have a PICU and we were told the nearest available space was Southampton. Our baby would be flown there and we would have to drive. He was then moved to the adult intensive care unit within our local hospital and thankfully, whilst awaiting transfer, a space came up at a PICU a lot closer to home in Bristol. He was moved there the following evening.

Nothing prepares you for the sights of PICU (not even previously having had a baby in NICU). You worry about what is happening to your child, are saddened by extremely poorly children and worry about what else your child might pick up in hospital. Our son remained intubated for the weekend whilst they tested him for meningitis (which was negative thankfully), then they suctioned excess mucus and carried out physio on his chest. We sat by his bedside and I continued to express for him which was hard all whilst missing our little girl back at home.

On the Monday they decided to extubate him which was a success - his breathing settled. That same evening we were transferred back to our local hospital and the next day discharged home (albeit after many nervous talks with the consultant, and trying to process the events of the weekend, worrying if my baby was really okay and worrying that there are other children who really need the bed).

To say it was an emotional roller coaster of a weekend is an understatement. I asked about the RSV vaccine but was told he didn’t qualify. The RSV journey doesn’t end when you leave the hospital though. I made several trips to the doctors and hospital after that as I wasn’t convinced his breathing was right. Even three years down the line I hate the winter period and RSV season. It took away the new born joy and replaced it with anxiety. People wanted to visit but I couldn’t bring myself to have people holding him just in case they had a cold.

When my toddler came home from nursery I was constantly worried about her giving him kisses and cuddles - if we took him out in the pram he would always have his rain cover over it. It always felt like you were keeping people at arm’s length.

There needs to be much more awareness of RSV and the impact it can have on babies, especially premature or sick babies. Having read up on it, our son had hardly any of the classic symptoms and the main reason I had him checked was the pauses in breathing and not waking for his feeds.

The consultant told us that we were just unlucky but I definitely think parents and the general public need to be aware of how a seemingly ‘simple’ cold to them can have such heart-breaking effects on babies and their families. We were one of the lucky ones who got to bring our baby back home.

It’s a fine balance between informing parents of RSV and not scaring new parents. I am part of a premature baby group on Facebook and I kept seeing the term RSV used on there so when it was mentioned at the hospital, I knew it was bad.

People love to have cuddles with new babies but I think just general awareness amongst society would help massively as parents wouldn’t feel so worried about saying no, as generally no one really knows what RSV is until it affects you.