RSV experiences: “It’s triggering for a NICU parent to see your child struggling to breathe again”

When we welcomed our daughter, Emmeline, on 14 January 2025, it was the end of a long and difficult pregnancy. Like my first child, Emmy was suspected to have fetal growth restriction. This time, I also faced possible preeclampsia, resulting in countless hospital stays, scans, and emergency appointments. I felt like I lived at the hospital.

Doctors warned there was a high chance Emmy would need neonatal intensive care (NICU) after birth. Winter RSV cases were already stretching local capacity, and I was told that if our NICU was full, we might have to be transferred to another hospital. Knowing she would be born early and small, I had proactive discussions with the NICU team about her care plan.

During pregnancy, I received the RSV vaccine—something I hadn’t been offered in my first pregnancy. I first heard about it from my sister-in-law, who was also expecting a winter baby. It felt like a sensible precaution.

Emmy was born prematurely at 36 weeks via planned C-section. She was taken straight to NICU, where she received high and low flow oxygen for more than a week before moving to transitional care to establish feeding. Thankfully, despite the RSV surge, we didn’t need to be transferred to another hospital.

Once home, Emmy settled well. But at 12 weeks old (8 weeks corrected), she developed cold-like symptoms and struggled with thick mucus and laboured breathing. Our GP advised monitoring, but four days later, when she wasn’t improving, I took her to A&E. There, she was monitored and given suction to clear her airways. Seeing her oxygen levels remain stable gave me the reassurance to bring her home.

She was still unwell for another two weeks before recovering, having been diagnosed with bronchiolitis. Throughout, our local hospital was compassionate, responsive, and never made me feel like an over-anxious parent.

I’m deeply grateful for their care – and for the RSV vaccine. I can’t know for certain, but I believe it played a vital role in protecting her. Without it, her illness could have been much worse. 

Our twins were born at 23+3 in February 2023. Sadly our twin 2 passed away at one day old. Our surviving twin faced lots of challenges in the NICU but came home in June 2023 on home oxygen due to chronic lung disease. He was eligible for RSV vaccines in winter 23/24 and had no admissions. The next winter 24/25 he was no longer on oxygen so no longer eligible for the vaccine. 

In November 2024 in his first winter with no vaccine my baby became increasingly unwell and was fighting for breath, so we took him to A&E where he was admitted to the children’s ward and diagnosed with RSV. He was placed on high-flow oxygen, and we spent 3 days on the ward getting him back to health. It’s a triggering experience for a NICU parent to see your child struggling to breathe again and placed back on oxygen.