The escape to Guilford Street meant we were refreshed for Frazer

When we arrived at Great Ormond Street Hospital on 10th March 2014, we had no idea of what the next few days would hold for us. Our toddler Frazer was to undergo major surgery the following day.

So, how did Frazer end up at GOSH, hundreds of miles from our home in Scotland? Here’s his story…

Frazer’s rollercoaster began the day he was born, 16th December 2011, he was having difficulty breathing. He spent a couple of nights in the Special Care Baby Unit in St John’s Hospital, Livingston, but seemed alright. He was a very noisy breather, some likened him to Darth Vader from Star Wars (!), but we were assured that he would grow out of it in time.

But then, at five weeks old, as we were driving to a family day out, my older children Sandy and Katie started shouting that Frazer had stopped breathing and had turned blue.

We rushed round the corner and as fate would have it the hospital was in sight. I will never forget the shocked faces as I ran into A&E with a very young baby in my hands thumping his chest, giving him CPR.

Frazer was revived, but urgently transferred to Edinburgh’s Sick Children’s Hospital. We spent a week there with Frazer in an induced coma as the medics tried to find out what was wrong with him. Finally, they discovered that Frazer had a double aortic arch: instead of having one branch, his aorta went both sides around his windpipe forming a ring and crushing it, hence the breathing problems.

Frazer was then transferred to Yorkhill Children’s Hospital in Glasgow where he underwent two operations; however his situation didn’t improve. We were told then that the double aortic arch had left him with a very floppy windpipe referred to as severe Bronchomalacia which required another operation to create a whole in his windpipe for a tracheostomy to help him breathe. During this time Frazer was being ventilated. On Easter Saturday 2012 Frazer was rushed to theatre as he was not breathing, his windpipe had literally glued itself together. Fortunately they managed to reopen the airway, but the consultants were forced to put a cardiac stent in Frazer’s windpipe, something they loathe doing due to the risks, but there was no option - it was the only way to ensure his windpipe remained open.

At the end of May 2012 Frazer had two very close brushes with death, unknown to anyone his aorta had fused to his windpipe, and twice in a week he bled severely, becoming critically ill, but due to the skill of in the team at Yorkhill’s Cardiac Intensive Care Unit, they saved him.

After this Frazer started to improve dramatically, but in May 2013, just as we were almost ready for Frazer to finally come home we were dealt devastating news…During a routine operation, the doctors saw that the stent put in just over a year before was migrating into his oesophagus. Frazer would require complicated surgery to remove it, something that had never really been done in such a young patient before.

This was when we were moved to GOSH for specialist treatment. Frazer was discharged from Edinburgh in July 2013, but we then had months of uncertainty ahead of us. Frazer was finally booked in for his operation in March 2014. Just three weeks before, we gave birth to our youngest daughter, Isla and realised we would have to leave her at home along with Katie and wee Sandy as Frazer, Kirsty and myself travelled to London.

The operation was a risky procedure that required Frazer to have both a heart and lung bypass. We were told this could take 12 hours. It was at this point we were welcomed by Tina from The Sick Children’s Trust’s free accommodation at Guilford Street House.

Six hours passed before my phone rang. I held my breath; amazingly Frazer’s surgery was over, with no complications, and with everything and more achieved. Frazer was to be kept in an induced coma for the next few days to recover before we would begin to find out how well he was going to be. This was going to be the hard bit, and this was when having somewhere to stay and be a sanctuary for Kirsty and I was going to come to the fore.

Unless you have had to spend days, weeks or months camped at a loved one’s bedside in hospital, then you have no idea how exhausting it is. These escapes to the house enabled us to return to Frazer’s bedside everyday refreshed and ready to help look after him.

Guildford Street wasn’t just somewhere to lay our tired heads after spending hours every day camped at his bedside, it was where we could prepare and eat meals, offload to Tina, and support and be supported by other families staying in the house that also had children who were very ill in hospital.

Talking to other parents helps to put things in perspective, you realise you’re not the only one going through a range of emotions and you feel a natural desire to help support in way that you yourself have received support. The house has a laundry room, handy when you haven’t had the room to pack more than a few days’ clothes, and your child is quickly going through what little you brought for them.

Frazer’s recovery went through the roof. He woke from his coma and was smiling and laughing. The operation had been successful beyond our wildest dreams – he came off the ventilator and we were able to take him out for walks and bring him back to the house to see Tina. To have somewhere we could take him for an hour or so outside of the hospital environment was a Godsend, we finally felt we could relax. It was good for Frazer too to visit a homelike environment.

On 29th March 2014, we were able to take Frazer home. Since leaving, he has gone from strength to strength, doing the things he should have been able to do for years. He is the happiest little boy you could ever meet, oh, and we’re just a little bit happy too!

When you read all this you may think that staying in The Sick Children Trust’s Guildford Street House was an insignificant part of our story, but it is actually the opposite.

By Sandy Orr, Dad to Frazer