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Without the incredibly generous help from the charity, this whole experience would have been made one hundred times worse for us

News   •   Dec 17, 2015 14:53 GMT

Our son was eager to arrive into the world, in fact our boy Fred decided that he wouldn't wait for his official due date and took it upon himself to arrive 10 weeks earlier than planned.

We knew that, because Fred was born so premature, there would be a bumpy road ahead, so we were faced with two conflicting emotions. His birth was a joyous occasion for us, but sadly it didn't change the fact that Fred was a very poorly little man. It was frightening. We had waited months to meet our son and we were constantly on edge, terrified we may lose him.

Fred went through a lot in just those first few hours; he fought for every breath and was even resuscitated at one point. We watched his tiny body trying so hard to survive and he managed to pull through with the help of a ventilator.

As he got stronger, the doctors at Basildon Hospital tried to take him off the ventilator, but there were many failed attempts. Eventually, they made the decision that he required specialist treatment to ensure he carried on breathing – he was rushed off over 60 miles away to The Rosie Hospital, Cambridge, still not even a day old.

We didn’t know how long we’d be in Cambridge for; we just had to wait until he was ready to come off the machine. My wife, Hanna, and I had no idea what tomorrow would bring, or the day after, as you can imagine this was an incredibly distressing and intense time for us. No words can describe the dread, panic and worry we were feeling. We were, however, fortunate enough to have been helped by a charity called The Sick Children’s Trust.

I cannot stress enough that, without the incredibly generous help from the charity, this whole experience would have been made one hundred times worse for us and we would have easily been overwhelmed by the rollercoaster ride that has been Fred's life to date.

The Sick Children’s Trust runs a ‘Home from Home’ at The Rosie called Chestnut House which provided us with unwavering support. Not only did it give us amazing accommodation minutes away from Fred, but the staff were on hand offering incredible help, advice and plenty of tissues for Hanna. Nothing was too much trouble for them. They always took the time to ask how Fred was and they also helped to arrange follow up care for Hanna after her emergency caesarean (Hanna came straight to The Rosie from Basildon Hospital the day after Fred was born).

It was so important for us that we had a place to stay at Chestnut House, on more than one occasion Fred would go ice-blue and stop breathing, causing his heart rate and oxygen levels to drop, which meant he needed emergency treatment. I can’t imagine what would have happened if we received that call back home in Basildon and had to make the journey up. Chestnut House meant this never came into the picture.

It was while we were at The Rosie that Fred was diagnosed with a weakening muscular disorder, myotonic dystrophy, which complicated matters even further. But the Chestnut House team supported us by helping us to understand what our little boy was going through. They showed genuine compassion when we needed it the most and gave us a ‘Home from Home’ for Fred’s entire six week stay.

After his treatment at The Rosie, Fred spent some time back in Basildon Hospital and we received training to prepare for him to come home. This covered a large number of things, from learning about how to safely feed him through his tube alongside basic life support for babies. But now, we are delighted that Fred has been home for a month and is doing really well.

He does have some ongoing issues related to him arriving 10 weeks early and also his myotonic dystrophy – but it’s not the end of the world. He’s home, safe and well. That’s what’s important.

He’s our miracle. He went through so much, so early yet here he is with us at home and we cannot wait to celebrate his first Christmas, which will be extra special – not only because it’s the first, but because he will be at home, where he belongs

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