Sam's story

In 2015, our lives were turned upside down. Without warning our little boy entered the world by an emergency caesarean section. Harrison was born at 5:03pm weighing 550g, at just 28 weeks gestation. We were both terrified that we might lose him as he was whisked away from us and straight in to the intensive care unit so that the doctors and nurses could try to save his life. We were told that the first 24 hours were crucial and that every day Harrison lived, he would grow and become stronger.

His mum and I had never felt so scared or so alone. We felt like our hearts had been ripped from our chests – we felt completely numb. We spent an agonising four hours before being able to go to see Harrison for the first time. He was tiny, but perfect - and he was ours. He was in an incubator, covered in plastic to keep his skin hydrated. He was also on a ventilator to help him breathe. We were both so proud of him, but couldn’t help crying. We both cried a lot over the next 94 days, but the first week in particular was the hardest time of our lives.

A few hours after he was born, Harrison was transferred to another hospital as he needed more advanced care. It was heartbreaking for us to see him being wheeled away, but we needed to stick together and keep each other strong.

The following morning his mum was still in hospital, so I went to see him without her. I can honestly say that I have never felt so alone and scared. The noises in the ward were terrifying. There was the constant drone of beeps in the ICU and Harrison was hooked up to so many different machines. When I left to go home, I sat in the waiting area and cried. It was a really lonely place to be, but we had to stay strong for Harrison. He was still doing so well and had nearly reached the first milestone we had been told to aim for – he was nearly 24 hours old.

His mum was discharged later that night and went straight to his side. She was terrified. She cried the whole time we were at the hospital and was in pain from the caesarean, but she soldiered on, just like Harrison was doing. We got home after a tiring day and cried all night. We were very fortunate to have fantastic families and friends to support us, but sometimes nothing or nobody could lift us. We were just so worried that Harrison might not make it.

Over the course of the following week, we had many ups and downs. There were difficult days and days where we found an inner strength from nowhere. We began to get to know the nurses who were looking after Harrison and trust what they were doing, but we were still worried. He couldn’t be fed milk as he had a really swollen, dark tummy which seemed to be getting worse, so he was fed through a tube. The doctors were concerned and sent him to a larger hospital for observations when he was just five days old. After numerous X-rays and blood tests, he was given the all clear. He just had an underdeveloped gut, which would sort itself out in time.

By day 12, Harrison had put on weight and by day 13, the doctors started feeding him breast milk again. It was around this time that we started to feel calmer – not all the time, but sometimes. We felt like we could talk to people about what we were going through and share stories with the other parents, who felt just as alone as we did. We realised what a massive help this could be, not just to us, but to them too. We quickly made friends, not only with the parents, but also with the doctors and nurses. We got to know each of them individually and this helped us gain trust in them and the care they were giving to our little boy.

Harrison’s mum didn’t get to have a proper cuddle with him until he was 15 days old. It had been such a long time to wait, but it was worth it. I remember being anxious, but we could soon see how quickly he settled against his mum’s chest.

When Harrison was 25 days old, the doctors said he was well enough to return to the hospital where he was born. His tummy was still bloated and the doctors thought the oxygen he was receiving could be the cause, so they put him on something different. By day 37, he weighed a whopping 1kg and was starting to be weaned off his oxygen. By day 42, Harrison was transferred to low-flow oxygen – another positive step, as this meant that Harrison didn’t require the same level of pressure to keep his lungs inflated – a sign that he was starting to breathe more on his own.

Harrison was removed from oxygen on day 45, but it was short lived, as he only managed three hours without it. He now weighed 1.16kg and it seemed to be taking a lifetime for him to put on weight, but it slowly increased. He then started oral feeds and was transferred into a cot! It was so nice to be able to touch Harrison whenever we wanted, without having to open the incubator doors, but also frightening that he was open to the world for the first time.

The first talk of Harrison coming home was on day 69. It was hoped that he could be home for his due date, 6 June 2015. Unfortunately when this day came he wasn’t quite ready to be discharged. We were disappointed, but knew it wouldn’t be too much longer. The nurses knew we were disappointed at not being able to take Harrison home so they arranged for us all to stay together. He kept us awake all night, but it was worth it!

We were finally able to take him home on day 95, on oxygen. We woke up feeling apprehensive, but we knew that this was what we had been waiting for. It was time for us to start the rest of our lives as a family – all of us together under one roof. We had been so jealous seeing the other mums and dads carrying their little ones out of the maternity ward in their car seat, but now it was our turn and we were going to cherish it.

We had gone through so much during this journey - eye tests, ear tests, brain scans, liver, lung and kidney checks, X-rays, blood tests, immunisations, transfusions. Harrison had infection scares, low sodium levels, low potassium levels, weight issues, breathing issues, tummy concerns, and a potential heart murmur. He had been poked and prodded and subjected to many invasive and probably uncomfortable procedures. Now it was time to take him home, he would be spoilt rotten by all his family and friends, most of whom had waited three and a half months to see him.

So much happened during our time in hospital. If we could give one piece of advice to other new parents, it would be to seek support from others - you aren’t alone. There are organisations like Bliss who can help, other parents who are going through the same as you and a fantastic team of doctors and nurses who are doing everything they can to give your child the best possible start at life.

There will be days where your child is having a good day, yet you won’t be able to cope and there will be days where your child might be having a bad day and you will find strength you didn’t know you had. However long your child is in hospital, look to the future and the time when you will be able walk through those doors together, as a family – that’s what got us through it!

Harrison still has a long way to go developmentally, but he’s healthy thanks to all the fantastic care and support he received, and that’s all we ever could have wished for.