Guilford Street became a ‘Home from Home’ when our baby Edward needed urgent treatment in the UK

The first thing to say is that we live in Malta. When our son Edward was two months old, his GP noticed a heart murmur during a routine check-up. He was quickly diagnosed with pulmonary stenosis, which is a narrowing of the artery that leads from the heart to the lungs. This means the heart has to work overtime to pump blood through the narrowed valve to get the blood from the heart to the lungs. As a result, his heart was quite thick and muscly which was less than ideal.

We were told that surgery was needed to fix the problem, but that Edward’s case was quite severe. He had an operation in Malta soon afterwards, but they weren’t overly optimistic about whether it would be a success.

The doctors’ cautious prognosis was right and two months later we were referred to Great Ormond Street Children’s Hospital in London, as the medical resources weren’t available here in Malta.

We packed our bags and Edward, my wife Gayle, our other four-year-old son Samuel and I arrived in London on 19th December 2013, for an operation on 23rd December.  Just in time for Christmas we thought… We were anticipating being home by the end of the first week in January and looking forward to starting a new year together with a more positive outlook for Edward.

When we arrived, we were shown to The Sick Children’s Trust’s Guilford Street House, just a few minutes’ walk from Edward’s ward. This would be our family’s ‘Home from Home’ until Edward was well enough to return with us to Malta.

Edward’s operation was rescheduled to the 31^st December at the last minute. This did mean we got to spend a relaxed week together as a family over Christmas - especially important as we were so far from home. Guilford Street was decorated with a big tree and lots of tinsel, lights and baubles and that helped spread some Christmas magic, especially for Samuel who could be sure that Father Christmas knew where to find him.

On New Year’s Eve, Edward underwent a six-and-a-half hour operation to fix his heart defect. The operation went well, but his recovery didn’t.

Instead of spending two to three days in the Flamingo Ward - the cardiac intensive care unit at Great Ormond Street - he stayed almost seven weeks, and then a further two weeks on a regular cardiac ward.

He got sick quite quickly: his lungs and kidneys stopped working. His list of medical complications was overwhelming. He had post-operative bleeding, suspected deadly bowel disease necrotizing enterocolitis, acute renal failure requiring dialysis, acute respiratory failure requiring high-frequency oscillatory ventilation and nitric oxide. He had chylothorax, left pleural effusion, central line sepsis, a CMV infection with a high viral load, a “persistent fever of unknown origin”, and lots of other words that we came to understand but didn’t want to hear.

Somehow Edward pulled through and defied all expectations. We have no doubt being there with him helped in some way to get him through those dark days. We’re thrilled to say that he is now home and healthy, and so are we, his parents and brother.

We wouldn’t have been home and healthy if it hadn’t been for The Sick Children’s Trust, and specifically House Manager Tina and her team at Guilford House.

It made such a HUGE difference to have a base so close to the hospital, at no added expense, particularly at a time when our income dropped so drastically given the extended period away from home and work.

To have a home, a kitchen to use as our own, laundry facilities, a wardrobe (so we didn’t need to live out of suitcases) and the friendly support of the other families, and of course Tina and Oksana, was an enormous boost and relief.

Our eldest, Sam, is a handful. He has a few behavioural quirks, and the change in routine wasn’t kind to him. Tina didn’t blink or hesitate to help us when Sam was playing up. She is a saint.

We are all so very grateful to have been lucky enough to benefit, and while we hope we’ll never be back, we’d absolutely want to be in the care of The Sick Children’s Trust.

Matthew Kimberley, dad to Edward now 10 months