“Bliss provided helpful information on RSV” - Lata’s RSV Story

I had three premature babies, all born at 30 weeks gestation. My eldest daughter, Lara, is two years old now, and my twins Jai and Vaani, are now nine months old.

When I gave birth to my eldest daughter, it had taken thirteen rounds of IVF, a difficult pregnancy and six weeks on the SCBU to bring my baby girl home.

I didn’t fully understand the link between RSV and prematurity but I had heard other people and family members talking about it, so I knew how serious it is. I was really conscious of it and knew the signs to look out for, and therefore kept her in the house until February. I really didn’t want her to get ill. Then, Covid hit at the same time – we pretty much stayed indoors for the whole year.

Since then, Vaani has been constantly in and out of the hospital, constantly ill and very chesty. She still struggles with tugging in her chest, sometimes stops breathing and is still the same weight as a new-born.

A few days later, my son Jai got poorly too – he didn’t tug but wasn’t taking feeds at all so ended up in hospital for assisted feeding and suction. Luckily he’s been okay since. However, with Vaani I’ve been constantly worried and on edge with her. My husband and I normally alternate when we go out so we can stay in and look after her. We don’t take her out very much, and her weight is not increasing as she’s not able to eat and drink.

Bliss provided really helpful information – I used their RSV animation to help me identify why my babies were poorly. When Lara was first born, I spoke to Bliss quite a lot, as I’d seen their information and support on the neonatal unit.

It’s awful to watch your children go through a struggle to breathe especially after you have been discharged from NICU. It’s extremely lonely and heart-breaking. I wish there was a little more care for premature or sick babies with RSV as it can change so rapidly, in terms of the amount of intervention they need. I felt like a paranoid mum but I knew where it was heading, so I kept pushing for help.

My advice for other parents would be to keep a close eye on their tugging, how full their nappies are and track their feeds. It does pass and horribly it can be recurrent but they are little fighters. If you think there’s something wrong, pursue it yourself by going straight into A&E. Trust your instincts - if you think something isn’t right, then make sure you are seen.

Find more information and support on RSV.

If you need support please email us at hello@bliss.org.uk