‘This is NICU’ filmstar: Sebastian (35 weeks)

Sebastian was our third baby and I’d suffered with hyperemesis throughout the pregnancy, which had led to me being hospitalised a few times, sometimes for weeks at a time. Despite this, there were no concerns about him and he was growing really well.

At 35+1 weeks, I called triage because he was moving a lot more than usual one Sunday evening – the movements felt out of control and my gut feeling was that something wasn’t right. I drove myself to Stepping Hill hospital, almost in denial. The nurse hooked me up to the monitor and a doctor arrived quite quickly. I’d later find out that they were concerned that his movements were so erratic and thought he could be fitting. 

A brief glimpse

I was quickly moved down to the delivery suite and they asked me to get my husband to join us. They continued to monitor him throughout the evening whilst I was having mild contractions and eventually, after some concerns around his heart rate, the decision was made to perform an emergency c-section.

I remember specifically asking the midwife if he’d need to go to NICU and she said it was very unlikely. That moment is so vivid in my memory. Unfortunately, that’s exactly what happened.

Although he was born breathing for himself, he quickly required resuscitation in theatre and was whisked down to NICU – I got a glimpse of him as he was rushed past. 

Hospital transfer

After a number of failed intubations, we were told he would need a specialist team to come from another hospital. In the middle of the night, on a postnatal ward of mums and babies, we were told by the consultant that his airway was unstable and she was concerned he had a congenital abnormality preventing them from ventilating him. We were petrified.

The team from St Mary’s thankfully arrived quickly and managed to stabilise him and intubate him and he was transferred, on his own, to St Mary’s. They brought him up to see me before they left, and looking back on those pictures I don’t think anyone actually looked more concerned than the midwives – it felt like a very real possibility he wasn’t going to make it.  

I joined him around 12 hours later and still can’t put into words what that time felt like. The team at St Mary’s were incredible and helped my husband keep me updated until I was transferred. There is nothing that prepares you for being separated from your baby that you haven’t even held. 

First impressions

Being wheeled into NICU is an experience that’s so difficult to put into words – going to meet your baby who is being cared for by a nurse 1-1, who now knows him better than you do. Fortunately, those nurses were without doubt some of the kindest, most patient people I have ever met. I truly felt like I could trust them and no question I asked ever felt silly. The team worked incredibly hard to stabilise him over the first few days, and finally, on day 3, I was able to hold him for the first time.

Sebastian was a fighter and quickly worked through ventilation, c-pap and oxygen until he was breathing on his own. After around a week we returned to Stepping Hill to work on his feeding, and he finally met his brothers and grandparents for the first time. This was an absolutely incredible experience and for the first time it felt like we were being truly supported by our family because they could see, and feel, everything we were experiencing. 

We spent another week in NICU stabilising his feeding and getting him to take more milk orally – reducing his need for his nasogastric (NG) tube. We spent most of this time on Transitional Care, which had only recently opened at our hospital. This time was absolutely invaluable.

I, like many others, was on such high alert for anything that didn’t feel right and having a nurse on hand to ask questions to and to check your baby over is truly needed. 

After two weeks we were allowed home with our tiny 5lb (2.27kg) baby and I will never forget his big brothers’ faces as they walked into the living room and saw him. 

Well-meaning comments

One of the things I really struggled with throughout the time and in the time that followed was toxic positivity. Phrases like, “it could have been worse”, “at least he’s ok now”, “at least you have time to rest” etc. People mean well, but it’s so dismissive of the experience you’ve had, or are having. It’s so unhelpful. 

If I could ask people to do one thing with NICU parents it’s to ‘sit with them’ where they are – you don’t know what it’s like; but you can emphasise. People are really quick to minimise people’s emotions and experiences and it feels very difficult. Allow NICU parents to tell their stories – to recount and relive their experiences – it’s all part of us desensitising. 

It’s three years now and some days it feels like only yesterday. Things take you back at moments you least expect it and I truly think you can only understand the impact and lasting impact of NICU if you’ve experienced it. I’m pleased Sebastian is part of This is NICU because XXXXXXXXX

Thanks to Jenna for sharing Sebastian’s story and video for World Prematurity Month 2025