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There were days I was genuinely scared my little boy might not make it. But being so close to him during such a difficult time took a huge weight off my shoulders

News   •   Jan 08, 2016 10:18 GMT

When I went into hospital for a check-up appointment I was only 31 weeks pregnant – the last thing I expected to happen was that in just three hours’ time my son would be born, and that he would be spending the next three months in hospital.

On December 9 2014, I left work early for a check-up at Queens Hospital in Romford. I'd felt reduced movement from my baby and wanted to make sure everything was okay.

I fully expected to be sent home within the hour, but after several scans and tests, doctors discovered that my placenta was failing, and there was restricted blood flow through the umbilical cord. This was causing the baby's heart rate to keep dropping. An ultrasound showed that he was also smaller than average. The decision was made that I would need an emergency caesarean.

Dylan Sharpe was born at 3.47pm, weighing just 2lb 8oz.

Thankfully, my Mum had decided to come to the hospital with me. It all happened so quickly my partner, Gary, wasn't even able to make it from work in time.

Dylan spent four weeks in Queens neo-natal intensive care unit and luckily he had no serious health concerns - he was just very small and needed monitoring.

On the day Dylan was due to come home, a nurse told us they wanted to keep Dylan in for another night as they were concerned with how sleepy he had been whilst feeding. I gave him one last feed before we went home and that was when things changed. While he was feeding, he choked on some milk, stopped breathing and turned blue.

Before we knew it we were surrounded by nurses who took Dylan from me and administered oxygen until he was breathing properly. When Gary and I were allowed back in the room, Dylan had been put back into an incubator and was now on a ventilator. That was a really difficult thing to see because he’d come so far.

We were told that Dylan had a bowel condition called necrotising enterocolitis (NEC). This is where the bowel tissue starts to die, and unless carefully managed, it can prove fatal.

There was a possibility that Dylan would need surgery, so he was transferred to the Royal London Hospital. It was nearly an hour away from where we live in Harlow but it was the best place for him to be should he need surgery.

It was at this point that we found out about Stevenson House, a free ‘Home from Home’ next to the hospital, provided by The Sick Children's Trust.

Unfortunately, there was a waiting list and we weren't able to get a room until almost a week later. During that time we were travelling to and from the hospital, which made us realise just how awful and unsustainable it was. But as soon as one became available, we were met by the House Manager, Alan, who welcomed us to Stevenson House.

After ten days of rest, doctors thought Dylan was well enough to start reintroducing feeds. At first he was doing really well, but after a couple of days he stopped tolerating them. An X-ray showed air bubbles in his abdomen and so it was decided Dylan would need surgery to remove a small section of his bowel. He had a stoma placed with a colostomy bag, something we would have to get used to changing.

At this point, it was a godsend to be able to stay at Stevenson House. Having had a caesarean, I wasn't able to drive or get the train by myself, so being able to stay round the corner from the hospital was amazing. I could stay with Dylan until late without having to worry about missing the last train home.

It was also reassuring to have a phone with a direct line to the ward in my room, and to know that if the hospital contacted me for any reason, I was literally two minutes away.

The facilities were great, and we made full use of everything - the kitchen, the laundry room, and even the quiet room, which we used regularly, including the night Dylan had his surgery as we wanted some peace and quiet while we waited for a call from the hospital.

The house offered us a welcome escape from the endless beeping and noise of machines. Immediately after Dylan’s surgery there was nothing we could do for him except watch him sleep, so being able to pop back to my room and catch up on sleep was a huge help.

It was lovely having other people around who were going through similar experiences, to remind you that you weren’t alone. There was another couple staying in the house whose little boy had also been born prematurely and was, at one point, in the bed next to Dylan in the NICU. I still speak to them to this day.

The house manager Alan, and Irma his assistant were an absolute delight to be around. They were always so welcoming and friendly and I always felt I could approach them with anything I needed, even if it was just for a chat. I cannot thank them enough.

I was in a bad place at times - there were days I was genuinely scared my little boy might not make it. But being so close to him during such a difficult time took a huge weight off my shoulders. Had I been at home I would’ve been sitting alone with my thoughts which would’ve made me feel so much worse.

Dylan finally came home on February 9th, and we were so pleased with his progress. But Dylan still had one last obstacle to overcome. After being home for a week, he was admitted to our local hospital for two weeks with an inflamed liver, a spleen and a urine infection.

Thankfully he made a full recovery and we finally brought him home for good on March 5th 2015! He has since had his stoma reversed, and has been absolutely thriving ever since.

The Sick Children’s Trust were such a huge help during this time so one of my close friends even arranged a Big Chocolate Tea Party to help raise some money.

I genuinely cannot thank The Sick Children's Trust enough for the compassion and hospitality I was shown during that time.

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