Mother's 277-day vigil for baby boy battling heart condition at Belfast's Royal Victoria Hospital
MLA calls for action on the future of Northern Ireland's child heart services
This is the baby boy whose mother has kept a 277-day vigil by his bed as he battles a life-threatening heart condition.
Baby Evan Swann is nine months old this week but he has never been to his family home in Kells, Co Antrim.
Instead, most of his life has been spent at Royal Victoria Hospital in Belfast where he is being treated for a heart defect, among other problems.
And his mother Jenny has been by his side from morning to night since he was born.
Their story is typical of many families across Northern Ireland held in limbo while a decision is made on the future of children's heart services.
Every morning Jenny arrives at the busy Royal Victoria Hospital around 9am, before making her way to the Clarke clinic where she remains by her baby son's cot for hours.
As the day goes on nurses, visitors and doctors go through their daily routine, coming and going from the ward.
No matter the time, they will see Jenny by her son's side.
This has been her loving routine for more than 277 days now.
The mother-of-two stays with Evan until late evening when her husband comes to spend time with their son after work.
Hospital surroundings in Belfast and Birmingham have been a second home to her and her family for over eight months now.
But for her second child Evan, this has been the only home he has known.
Since February 8, when Evan was born, Jenny's life has been turned upside down -- each day taken up with caring for her son as he fights to live. The family have been coping with a heartbreaking mixture of joy and the reality that their son was born with a life-threatening heart defect.
Evan was diagnosed with (AVSD) -- in simple language, three heart chambers instead of four and one valve in his heart instead of two. The little boy also has complications with his bowel and only one kidney.
He was born during a time of uncertainty for babies with heart conditions in Northern Ireland when the possibility of surgery services being closed.
Where will children in this situation be able to receive surgery after Health Minister Edwin Poots makes his decision -- Belfast, Dublin or England?
It was after 227 days of being treated at the Royal Victoria Hospital that the Swann family had to journey to Birmingham for surgery on Evan.
So they understand acutely the difficulties of having to take an ill child away from Northern Ireland for heart surgery.
Evan's father Robin explained the impact that having to prepare for surgery and travel to England has on family life.
"The dog, she's easy to sort, but how to prepare Freya, our wee girl who has just turned three, that mummy and daddy are going away for a few weeks with her baby brother, who has never spent a night at home, has not been easy," he said.
"Thankfully, we are blessed with two sets of loving grandparents without whose support I don't know how we would have survived the last year."
In a blog written about his experiences Robin, an MLA for North Antrim, gives an insight into a typical day with a child waiting for life saving heart surgery: "I head to work and Jenny heads to the hospital for the day, and after work I head across to the hospital and Jenny picks Freya up on the way home," he said.
"Then when Evan is asleep and settled for the night, I head home with the possibility that Freya isn't in bed yet."
Now back in Belfast, Evan is taking daily small steps towards Kells -- his home.
"It is very reassuring to be back in Northern Ireland and Clarke Clinic," said Robin. "We were there for just over two weeks when we came back from Birmingham. Now we are back onto the Barbour ward.
"Jenny is there every day and most evenings," he said.
"One of the basic and very unscientific ways we have measured Evan's progress is the number of wires or tubes he had connected," Robin said.
"When he arrived back from Birmingham he had a central line, oxygen nasal mask and four heart monitoring leads.
"If anybody had told us nine months ago (what) we would have been doing now, it would put fear into you, but it is one of the things you get on and you do because it is the right thing to do, and you do it. It is a strange phrase that Jenny and I use -- we actually consider ourselves fortunate because the defect was detected before Evan was born. So we knew from the initial scan he was going to be born with complications.
"We were able to get our heads round what was going to be in front of us. But there are so many families that don't have that luxury of knowing the child will be born with a heart complication -- blindsighted."
The hope now is that Evan's recovery will soon allow him to go home for the first time. And he may need further surgery when he is a teenager. His Ulster Unionist father, who understands the impact of having to travel to England, said a decision is needed from Mr Poots to help give parents in his position certainty. "The entire consultation process was simply a show," he said.
"I think the minister wants to do the right thing whether the administration behind him have that will or that desire and want to go back to the original proposal. But we need a decision."
Baby Evan Swann is nine months old and has never been out of hospital.
Evan was diagnosed with (AVSD) -- in simple terms he has three heart chambers instead of four and one valve in his heart instead of two.
He also suffers from complications with his bowel and has one kidney.
Evan is being treated at the Royal Victoria Hospital in Belfast, but has also had to travel to Birmingham for surgery.
His mother has been at his bedside every single day of his life.