"I thought NICU was only for premature babies" - Emma's story

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Emma's son, Freddie, was born at 41 weeks. When Freddie was born, he was not breathing and had seizures. He was diagnosed with HIE and needed emergency care in the neonatal unit. Here, Emma explains how it was unexpected for her full term baby to end up in NICU and how the experience affected her and her family.

I found out I was pregnant four months after my dad died. It felt like this pregnancy/baby was the rainbow after months of very heavy rain. I was really anxious about prematurity, as my cousin's little girl was born 12 weeks early and my twin nieces were also premature. All of them spent time in NICU. The further along my pregnancy went, the more I relaxed. Then I got to 41 weeks and I was just ready to give birth and meet my baby.

It was a really hot Sunday afternoon when my waters broke, but contractions never came, so I went in to be induced the next day. Very soon after my admission, I was placed on the sepsis pathway, due to high temperature and both myself and the baby had a fast heartbeat. We appeared to respond well to the medication, so went ahead with the planned induction. However, after hours of no contractions, my midwife felt something wasn't right. The doctor agreed an emergency C-section was needed. Everything happened so fast, consent forms, my partner Mark was gowned up, I had a spinal, and surgery started.

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I knew very quickly something was wrong. The doctor delivering my baby said “congratulations”, but the room was silent. I laid there for nine minutes while they performed CPR on my baby that I hadn't even seen yet. So many thoughts going through my head. I kept apologising to Mark, feeling an overwhelming guilt that this had happened. After what felt like a lifetime, we were told he was breathing and being taken to NICU. This was the point we found out we had a boy. They brought him in an incubator for me to have a glimpse of him then wheeled him off. I was in shock. I didn't know what to do or think. I knew about NICU, but naively I thought NICU was only for premature babies.

Mark and my mother were able to go and see him briefly soon afterwards, but I needed to recover, so had to wait. My first proper look at my baby boy was a photo my mother took. My midwife was amazing and made sure I got to see him before her shift ended. I was still quite poorly myself, so was reassured he was in good hands and told to get some sleep.

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When we returned a couple of hours later, we walked in to see him surrounded by doctors and nurses. As soon as they saw us, a consultant asked to speak to us in the family room. He told us our son had HIE and had a big seizure, and therefore needed to be put on a ventilator and receive cooling treatment. They said the next 72 hours were crucial and he might not survive. As well as that, he had suspected sepsis, suspected meningitis and meconium aspiration. I just sat there and silently cried.

I remember going back to my room and saying to Mark “we need to name him, our baby can't die nameless”. We still don't know where Freddie came from, but that's what we agreed on. Those first 72 hours were so traumatic, watching him lie there, no movement, no crying, no opening of his eyes. Then, slowly after they stopped the cooling treatment and sedation he started to wake. I managed to catch the first time he opened his eyes on camera. It was the first time I allowed myself to have some hope. We thought this was the start of things getting better, but Freddie was still having small seizures. He needed scans and more tests to determine the cause, but luckily, it turned out it was withdrawals from the morphine. Once they identified this and put him on a reducing regime he started to improve.

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When he was six days old, he was able to come out of the incubator for the first time. He had too many wires and tubes attached for me to hold him properly, so I had to make do with him lying on a pillow on my lap. Over the next couple of weeks, I was able to start breastfeeding and he graduated to the high dependency unit, then low dependency, and finally to the nursery. He was actually only on the nursery for two hours before they told us we could take him home. This was 25 days after he arrived. We were warned there could be long term damage from the HIE, but now, at three years old, he's recovered fully and you would never know he had such a traumatic start to life. He's met all of his milestones so far and was discharged from follow up a few months after his second birthday.

I felt very out of place in NICU with a full term baby. Freddie was 9lb 8 at birth and there were three other babies (all weeks older than him) in his bay and he weighed more than all of them combined. His problems were different, so it was harder to relate to their parents. On the day he was born, the nurses asked us to bring some nappies for him, as the biggest ones they had was too small.

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Despite how hard it all was, all the staff were amazing. We were very lucky that we had open access to the unit, so during the first week, as I was still in hospital myself, we would be there for probably 20 out of 24 hours if not more. They answered all our questions, explained every procedure, reassured us when we were scared and had an amazing skill of making you laugh when all you thought you could do was cry. I hated leaving him there, but knew he was safe. They even tolerated me phoning every two hours though the night.

Explaining that he was a NICU baby to others is always challenging too. They automatically assume he was premature, so I have to explain what happened which was never easy, as I felt like I was reliving the trauma all over again. Now he's okay it's easier and I feel an intense sense of pride for everything he overcame. Everyone, including us, thought that him being bigger would give him a better chance. But as his consultant explained, the fact he was big and in NICU shows how ill he was. On that first day we were told he was the sickest baby on the unit now he's just a normal toddler who is loving life.

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