“When our son Edward was two months old, his paediatrician – Prof. Simon Attard Montalto - noticed a heart murmur during a routine check-up. He was referred to Dr Victor Grech and was quickly diagnosed with pulmonary stenosis, which is a narrowing of the artery that leads from the heart to the lungs.

“The condition causes the heart 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 had muscle damage.”

This was the initiation of a harrowing story of an 11-month-old-baby, and nobody could have imagined what was in store for the boy from then onwards. Thankfully, the boy survived the nightmare and is now a healthy little boy.  

His father Matthew Kimberley told The Malta Independent that surgery was needed to treat the problem, but Edward’s case was quite severe. He had an operation in Malta soon afterwards, but doctors weren’t overly optimistic about its chance of success.

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

The Kimberley family packed their bags on 19 December 2013 and Matthew together with his wife Gayle and their other 4-year-old son Samuel arrived in London. Edward’s first operation was to take place on 23 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,” Matthew told us.

When they arrived in London they were shown to the Sick Children’s Trust’s Guilford Street House, just a few minutes’ walk from Edward’s ward. This was to be their family’s ‘Home from Home’ until Edward was well enough to return to Malta.

But things took a different turn. Edward’s operation was rescheduled to 31 December at the last minute. “This meant that we got to spend a week together as a family over Christmas - especially important as we were so far from home,” he said.

Again, things did not turn out well. On New Year’s Eve, Edward underwent a six-and-a-half hour operation to treat 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 was kept there for almost seven weeks, and then a further two weeks at a regular cardiac ward.

After the operation, his condition worsened. His lungs and kidneys stopped functioning. His list of medical complications was overwhelming, his father said. He had post-operative bleeding, a 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 stuff that Edward’s parents came to understand but didn’t want to hear.

Somehow Edward pulled through and survived against all odds and on 5 March the family returned to Malta.

Visibly emotional while describing the ordeal that his son experienced, Matthew said that “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.” He added that “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.”

For the Kimberley family it made such a huge difference to have a home so close to hospital fully equipped, at no added expense, particularly at a time when their income dropped so drastically given the extended period away from home and work.

For Matthew and his family it was a huge asset to have support from Tina and Oksana from the Sick Children’s Trust. “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.”

Donations to The Sick Children’s Trust can be done by visiting http://www.sickchildrenstrust.org/ .