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While this is still stressful, knowing that Acorn House is there just makes everything so much easier.

News   •   Apr 13, 2016 16:45 BST

After three days of labour, my wife gave birth to our beautiful son Dario at Bedford Hospital. Vincenza and I were beside ourselves with joy and extremely excited, we had no idea what to expect being first-time parents, but his arrival was the most amazing feeling.

Initially, everything seemed fine apart from a small skin tag near Dario’s bottom, which was noted but nothing more was said. However during that first night, Vincenza grew concerned as she watched other mums on the ward with their babies. They were all feeding regularly, being changed regularly…but this wasn’t the case with Dario. In fact, he had barely fed and hadn’t filled his nappy at all.

It was the following morning when we found out we were right to be concerned. Something was seriously wrong. Our midwife noticed a dimple on the base of his back and immediately called for a paediatric consultant who told us Dario’s bowel hadn’t fully formed and therefore his bottom had no opening. We were dazed, it was a shock and everything became a bit of a blur. The condition, anorectal malformation, is well known but that isn’t any comfort when you’re told your new-born baby needs to be rushed off to a hospital an hour away from home.

Within moments, Dario was put into the ambulance and I went with him while Vincenza waited for discharge. I was sick with worry knowing that our baby was critically ill with an emergency operation looming over him.

When we finally arrived at Addenbrooke’s, Dario was taken straight to the ward, and I followed. Once Vincenza arrived and was settled, we were visited by lots of specialists who explained to us what would happen when Dario went into surgery the following day. Then it was a case of waiting. I remember the kindness we were shown by the team that evening who let us stay with Dario until late into the night so we could spend every valuable moment together.

The next day, Dario went into surgery where he had a temporary stoma bag fitted to remove the waste from his body. That’s when we were given a room at The Sick Children’s Trust’s Acorn House, just a few minutes from his ward. The ‘Home from Home’ was so much more than we had expected. It brought us peace and a little normality – also the staff were so thoughtful and caring which made us feel even more at home.

We were relieved at how well the procedure went but we were told he would need two further operations. However, all in all it went well and his recovery was very quick. We believe this is because we could be by his side, and because he knew we were there. That was all thanks to The Sick Children’s Trust.

That’s the most valuable thing, when your child is seriously ill, spending time together and being there for them. Because we were there, it meant he had our energy as well as his own to get better. He knew he wasn’t fighting alone.

Since our first stay at Acorn House, we have been back regularly as Dario’s had many check-ups and treatments at Addenbrooke’s, and will do so for another year. While this is stressful and is still a worrying time, knowing that Acorn House is there just makes everything so much easier. Acorn House means we can be nearby in what has become a ‘Home from Home’. Staying at the house makes us feel calm. We believe our mood and positivity passes onto Dario, and has therefore helped him recover so quickly.

Dario has now had two operations and is doing very well – he hasn’t even been fazed by them or the fact he has a stoma bag.The next stage for our brave little boy is his third operation to reverse his stoma. It has been a very scary, worrying and unpredictable time, but thanks to the brilliant care at Addenbrooke’s and Acorn House we have felt a lot less pressure.

The Sick Children’s Trust makes a huge difference to parents, children and babies going through the most difficult times in their lives, so we are doing all we can to support the charity where possible. We’ve donated a printer and free cartridges from our company Cartridge Depot and we will also be encouraging other friends and families to join the charity’s Big Chocolate Tea event happening in April, so that more families can be supported by this wonderful cause.

Guy Ciampa, Dario’s Dad

*Guy and Vincenza are joining The Sick Children's Trust's Big Chocolate Tea fundraising event from April 22 to May 2 and are calling for others to get involved too.

For more information on Big Chocolate Tea visit www.sickchildrenstrust.org/bigchoctea

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