Disabled toddler spends Christmas in ICU after common winter virus triggers seizure: Lucinda’s story
4 mins read
Tuesday 14 December 2021
The number of babies and toddlers catching RSV (respiratory syncytial virus) and developing a serious chest infection called bronchiolitis as a result is skyrocketing. Mum Lucinda Turner from Hertfordshire still remembers spending Christmas in hospital with her 2-year-old daughter Nola as she recovered from the infection in 2019.
Here, Lucinda tells us what happened and why getting information about RSV from a trusted source like Contact is so important.
“Nola is now 4 years old. She has a rare genetic condition called Tuberous Sclerosis Complex (TSC) and additional needs, including epilepsy and global development delay. One night when Nola was 2, just before Christmas in 2019, she developed a nasty, deep, chesty cough.
“I remember thinking that it was the worst cough I ever heard her have, but other than the cough she was happy and well in herself. She didn’t have a temperature either. So we continued with our plan to spend the next evening in London. However, whilst there having dinner, Nola very suddenly had a prolonged seizure (status epilepticus) The seizure had likely been triggered by a high temperature caused by RSV.
“One of the best pieces of advice doctors gave me when they told me about RSV was not to google it. Always make sure you look at information from a trusted source like Contact.”
“We called an ambulance and were quickly taken to the nearest A&E. Nola was very poorly and was later transferred to paediatric intensive care (PICU) at Kings College Hospital. She spent 9 days in PICU on a ventilator over Christmas. This was followed by another week in the high dependency unit before being moved to a ward for three weeks.
“Nola had experienced prolonged seizures before due to high temperatures, so I thought this was going to be the same as previous times. I had no idea that she had caught RSV. It was clear on x-rays just how inflamed and full of mucus Nola’s lungs were – a sign of bronchiolitis, which some children can develop as a result of catching RSV. It was only when test results of Nola’s mucus came back that doctors told me she had RSV. I hadn’t heard of RSV before and how this common cough and cold virus can affect children like Nola and make them very poorly.
“One of the best pieces of advice the doctors gave me when they told us about RSV, was not to google it. I did and it was a mistake – always make sure you only look at information about it from a trusted source like Contact.
“Even if your child has the smallest symptom but you have a gut feeling about it, make sure you go with your gut and get professional advice. As I have seen, things with very young children, especially if they have a medical condition, can change very quickly and suddenly. Because Nola wasn’t able to communicate or indicate that she was feeling as poorly as she obviously was, it’s even more important to listen to what your gut is telling you and get medical advice as soon as you can.”
Read our information and advice about RSV
Watch our Facebook Live session about RSV with Dr Martin Samuels, a consultant respiratory paediatrician at Great Ormond Street Hospital.
If you have a child under three, join our Baby and Toddler Group to stay up-to-date with ways to keep your child healthy during the colder months.