A local politician has been inspired by his seriously ill infant son to start a blog detailing their experience ‘from the side of a hospital cot’.
UUP MLA Robin Swann and his wife, Jenny, were made aware that Evan, now eight months, had heart problems at the 22-week scan stage of his development prompting a referral to the Royal’s paediatric cardiac specialists.
Further tests revealed he had Atrioventricular Septal Defect; small holes in the two bottom chambers of his heart, no separation in the top chambers and just one valve where there should be two. It was also discovered that he had only one kidney and that his small intestine was not opened out sufficiently to allow food to pass through.
Evan was born some 10 days early and went through his first major operation aged just 36 hours. The procedure involved the removal of most of his small intestine, subsequently necessitating feeds via a peg in his stomach.
Just a couple of weeks ago, the brave little boy was air lifted to Birmingham Children’s Hospital for surgery to divide the top two chambers of his heart.
It was as the couple, who also have a daughter, Freya (4), waited for the call that a bed was available on the mainland that Robin decided to start an online diary.
Speaking to the Ballymena Times from Birmingham on Friday, Robin said he is keeping the blog mostly for other parents who may find themselves going through a similar experience should children’s cardiac surgery disappear from Belfast.
He also hopes it gets the attention of Health Commissioners and the Health Minister.
“Jenny and I are the lucky ones because we have support back home but not everyone has that,” said Robin.
He said: “The Children’s Heartbeat Trust here is working in conjunction with Dublin to try to retain cardiac surgery services on the island so that very sick children and their families don’t have to fly across the water.
If you would like to follow Robin’s blog ‘The Journey Begins’ log on to http://fromthesideofahospitalcot.blogspot.com/