Brave little Leo 'still here thanks to LauraLynn'
THE worst moment of John McWade's life came at 5am on a winter's morning as he looked down at his terminally ill twin baby struggling to breathe in his cot.
A few weeks earlier, John (50) and his wife Catherine had welcomed little Leo and his twin sister Molly into their lives on November 29, 2011.
But they learnt there was something amiss with one of the twin's hearts after 20 weeks of pregnancy.
Little Leo was born with a heart defect -- left ventricular hypoplasia -- where part of the organ was underdeveloped; his little sister was in perfect health.
"We were told four days later that he wasn't going to survive very long and the condition he had, which we were aware of, was inoperable," John said.
"He came home. We were told this is how you medicate him, this is how you care for him and this is what his day will look like.
"It turned out to be a little different than that. You couldn't even pick him up. He wouldn't tolerate being picked up.
"One particular morning, I think it was five o'clock in the morning, I rang the hospital because he was so upset. His breathing was really bad, I rang, I said: 'I need some advice what shall I do?' We were told: 'No don't bring him in, John, there is nothing you can do'.
"That panic that I felt along with Catherine my wife was probably the worst moment of our lives."
It was on a visit to the hospital that someone recommended the children's hospice, LauraLynn House.
The McWades, from Stillorgan in Dublin, were invited to move in with Leo on February 8 last.
John said: "The one fear we had was that he would be at home and he would die in distress. We would never forgive ourselves and I'd never be able to say to his sister: 'Yes, we did everything that we could to help him'."
John said the improvement in Leo was obvious -- as he pointed at a photograph of Leo taken in an incubator in Our Lady's Children's Hospital, Crumlin, in November and a recent snapshot of him propped up in a small blue and white striped babygro.
"One of the other things that happens to Leo -- this is why LauraLynn is such a special place -- he has had maybe seven or eight episodes where he has stopped breathing and his heart is stopped. He is gone, that is it, and he comes back. We don't know why; we are thinking of renaming him Lazarus," said John, with a glimpse of the black humour that has helped them survive.
"He is still here. He'll be six-months old next Tuesday. He wouldn't be here if he was still at home.
"Leo's story is quite incredible as we were told he had maybe days or weeks and now we have gotten to know this little boy.
"We can hold him and he looks up at me and he smiles, he looks up at Catherine and he smiles.
"He gets in the cot with his sister and they both have a little play around. It is the most wonderful thing."
Now, John explained, they could tell his little sister they had done everything possible to help her brother.