“We were terrified of him getting RSV or another winter illness” - Candice’s story

My baby boy William was born on 1 December 2021 at 32 weeks in Sheffield Children’s Hospital.

My husband and I weren't expecting William to be born early - I just went into spontaneous, early labour. He weighed three pounds and 14oz so he was small, but not extremely tiny compared to the rest of the neonatal babies.

William didn't have any particular health problems when he was born, but we were advised that he might need to stay in neonatal care for around eight weeks.

He was put in room two for a week, which was stressful as it’s quite an intense room full of really small and sick babies. He was ventilated for an hour or so, and after that was okay on oxygen in an incubator; he was just small and needed to feed.

William then had jaundice and was under the phototherapy lights for two weeks, which was a bit scary. His jaundice levels would drop and rise again, so we had quite a lot of back and forth.

William also struggled to maintain his temperature and breastfeed – I wasn’t producing much milk because he was born early and he wasn’t latching, so we swapped to bottles.

I think they should have cut his tongue tie earlier, but I don't really mind bottle feeding as it’s very convenient, and now he’s settled with my husband and his grandparents feeding him.

After a couple of days, we managed to go straight to room ten. I think we probably could have done with a step in the middle - he was potentially a bit too poorly for room ten, but not poorly enough for room two.

We spent Christmas Day on the unit – I had a Subway sandwich for my Christmas dinner! But I was just really glad that we could be there with William, and the staff were so lovely – they even made him a gift.

I was discharged after a week or so, and going home without him was the worst day ever.

Three weeks later, to prepare him for discharge, I did three nights where I stayed at the hospital overnight so we could look after him to help us feel ready to go home.

Staying there was great as we got lessons on parenting; we had so many questions and weren’t sure what was normal. By the time we got home, I think we were more confident than we would've been if we'd just been discharged. For example, we got shown how to give him his first bath which was nice.

On 28 December, around four weeks after he was admitted to NICU, William came home with the feeding tube in the hope that he would only need it for a week.

Before we left we had to have lessons on how to take William’s feeding tubes in and out, which was a little bit stressful because he hated it.

We stayed inside for a month after we brought him home because we were terrified of him getting RSV or another winter illness. We didn't go anywhere for a month and didn't let anyone touch him for about three months.

The nurses had told us about winter illnesses before we came home, but there was more of a focus on Covid-19 rather than RSV. Particularly, we were nervous about him catching something as his temperature was monitored so closely when he was in NICU and we knew that he’d have to work much harder than a typical baby.

When it came to summer 2022 everything was absolutely fine, but in winter William got a really bad cold - he was really poorly and wheezy, breathing quite rapidly, wasn’t settling and hadn't had much milk or anything.

My husband was out, but I decided I was going to take him to the hospital (I think that adds to the anxiety when you have to decide by yourself).

When we arrived they assessed us quickly and gave him some Calpol but said the wait for the doctor was going to be four hours. By that time the Calpol kicked in and he'd been upright for a while, I think all the congestion had shifted and he was bouncing off the walls.

We were there for about two and a half hours until about four in the morning. By this time his breathing had calmed and his temperature regulated, so we went home.

In November, the week of my birthday, William had another cold. This time I thought he’d be fine but he wasn’t ever getting 100% better.

I tried to get him to the doctor and they didn't have any appointments, but luckily they rang back with a cancellation at five o'clock that day.

I'd gone back to work by then so my husband took him to the doctor - the doctor took one look at him and said, “It's really bad, I think he's got an infection – he needs to go A&E.”

When we got to A&E it was a six-hour wait and the entire place was just full of wheezing babies – I thought, “If William didn't have RSV already, he’s going to catch it now!”

The doctors in A&E took one look at him, decided he was quite poorly and admitted him. We were on a holding ward because it was so full, then a temporary ward overnight, and then he did three or four nights in hospital. By the last day he was basically fine, but his oxygen levels weren't great.

The doctor said that they didn't think it was necessarily because of his prematurity, but it might be that his lungs weren't quite as robust as other babies.

Luckily William didn't need any antibiotics in the end but he was on oxygen just to help him for a couple of days. Once his levels came up, he needed to be oxygen free for eight hours before we could go home.

This was actually the hardest part because he was feeling better and crawling around by this point - they couldn't keep the wires on to monitor him because he kept pulling them off.

We got discharged at midnight in the end - I couldn’t stay any longer as I hadn’t had any sleep. William wasn’t sleeping unless he was being held so I had to hold him in a hospital chair for three nights in a row. It was really sad seeing him that poorly.

Thankfully William is doing well now at home. For any other parents who find themselves in a similar situation, my advice would be to trust your instincts, let the doctors do their jobs and remember that they’re in the best place.