“The unit became a comfort” - Luke’s story

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Luke shares his experience of having a baby born prematurely. His son, James (Jim) was born at 31 weeks and spent time in different neonatal units between Arrowe Park Hospital and Alder Hey Children's Hospital.

James (Jim) was born in March 2019 at 31 weeks’ gestation.

At our 20-week scan my wife Erin was found to have placenta previa. She was given a return scan date for when she reached 34 weeks to check up on the placenta’s position.

We were told this was fairly common and there was nothing to be concerned about as the large majority of placentas resolve themselves along with the growth of the baby, and we left with a standard issued leaflet to inform us more about the position.

The night before Jim was born, Erin woke me up to say that she thought her waters had broken – when we got up and turned the lights on it was clear she was having a large haemorrhage.

I called 999 and we were rushed to our local hospital where Erin was admitted straight into the delivery suite. The bleeding subsided but after some time and more scans, Erin started to bleed much more heavily and her condition deteriorated.

We found our room full of clinical staff – from the urgency in which they arrived and reviewed Erin, it was clear that our baby was coming and it was only afterwards we learnt that she was having a placental abruption and was beginning to go into labour.

The position of seeing Erin so unwell and not understanding what was going to happen to her and our baby was unbearable.

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Jim was born via emergency c-section at 14:48 weighing 3lb 15oz. I managed to have a brief look at him before he was taken away to the neonatal unit. A couple of hours later, the NICU called to say we could come down and visit him.

Erin remained unwell in recovery having a blood transfusion, so I briefly went with a member of the NICU team to go and meet our little boy whilst Erin’s mum stayed with her. I felt torn - I didn’t want to meet him without her but I didn’t want to leave him without either of us.

I don’t think I was ever going to be prepared for that moment – in front of me was a tiny little boy, surrounded by wires, drips, tubes and machines with a little arm tag reading “baby boy Hamilton”.

A little later that evening, Erin was well enough to come down to the unit with me and meet our little boy too. We needed help from the team to get Jim out of his incubator given all of the lines, drips and monitors he was attached to, including a CPAP machine, but we enjoyed our first cuddles together as a family.

From birth, Jim had trouble keeping his feeds down and was losing weight – the doctors looking after him were concerned he may have some tummy or bowel troubles.

After putting him on total parenteral nutrition through his veins and conducting some further investigations we found out he had a kink in his bowels and there were concerns about him having Hirschsprung’s disease.

This was something that required further specialist input so Jim was referred to the surgical team at Alder Hey Children’s Hospital. We spent three days waiting for him to get a cot space there, which felt like the longest and loneliest time as we didn’t know when they would move him, we would just have to follow behind.

The waiting was the worst as we knew Alder Hey would confirm Jim’s prognosis but we didn’t know if we were going to return to our local hospital or what the road ahead looked like.

When we eventually moved to Alder Hey, Jim needed to have a specialist test called a contrast study. This took several days for a slot to become available, and when the test was concluded we got the news that everything on his scans seemed okay and his bowels were just underdeveloped.

We moved back to Arrowe Park for several more weeks for Jim to develop and grow. We were stood down from NICU to HDU and eventually the nursery. It wasn’t all plain sailing – there were step backs and bumps along the way, however his progress and development was positive overall.

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We spent time with families, other babies and staff on the unit who felt like they were our family too, the unit became a comfort and it was hard to imagine life at home.

Throughout the time we had been in hospital we had celebrated Mother’s Day, Easter and my birthday all when Erin should have still been pregnant and we should have been preparing, packing our hospital bag and attending antenatal classes.

I had taken my two weeks’ paternity leave which took us to the point where we moved to Alder Hey, and I had a further period of absence from work with the situation we were in.

When we moved back to Arrowe Park, I found myself in the same position as many fathers, having to return to work far too soon. Eventually, Jim progressed so well with his feeding and weight milestones that he was almost ready to come home.

Jim was discharged on 8 May 2019 – 15 days before his due date. At last, we were at home as a family, starting our life together in our home. We will forever be indebted to the medical and nursing teams of both Arrowe Park and Alder Hey Children’s Hospital.

I spent endless hours looking at the support available from Bliss, and also joined some local groups for parents of children who are, or have been in neonatal care, and also groups specifically for fathers in positions similar to mine.

In the early days of our journey, every step of the day felt long and heavy. At times of uncertainty, waiting for answers felt like travelling with no light at the end of a tunnel.

With the support available from family, friends, clinicians, charities and others, our journey was supported and we can look back now at this part of Jim’s life and his story and be grateful for having our wonderful happy little 3-year-old so well cared for in his time of need.

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