One-year-old Clayton O'Donovan from Clonakilty, west Cork, has been in Temple Street children's hospital since he was two weeks old. He and his twin, Kyle, were born in September 2014.
Unable to breath unaided Clayton has never been home. He spent his first days in intensive care in Cork University Hospital (CUH) before going to Temple Street in Dublin.
Clayton was ready to return to CUH this summer. Once there, an hour’s drive from Clonakilty, he could begin a gradual move home. However, CUH has just two high-dependency paediatric beds and one is unlikely to become available before next year.
A spokesman for CUH said: “In the context of future developments of the paediatric service it would be envisaged that additional high-dependency beds would be considered.”
Clayton’s parents, Ashlene and Gearóid, who are self-employed and have two other children, make the 10-hour round trip to see him “once, maybe twice a week”, leaving at 4am, often returning after 10pm.
Their other children Caleb (4) and Sorcha (9) stay the night with friends or family.
After the twins were born, Kyle, the stronger of the two, went home for two weeks. But he developed complications and went the children’s hospital in Crumlin. At four weeks’ he had open-heart surgery and “flew through it”, says Ashlene.
Twin brother died
Across the city in Temple Street, Clayton remained weak. “He was just existing; so small. All you could see was this mask over his face.”
But Kyle deteriorated, developing pulmonary stenosis (obstructed blood flow to the heart). "He needed an operation that had a very low success rate, but we found a surgeon in England who agreed to come to Crumlin to do the surgery. But Kyle went downhill fast."
She, Gearóid and the children went to see him on Monday November 24th: “He was on a knife-edge”. They spent the day with him and Caleb sang to him. Gearóid took the children back to Clonakilty the next day, returning in the evening.
“We turned off the life-support on Tuesday night. The nurses in Temple Street were wonderful. They sent us a text saying they were praying for us and not to worry, they were minding Clayton. We carried Kyle home and buried him on Thursday,” says Ashlene.
“I came in here a few days later. I picked Clayton out of the cot, sat down and fell asleep with him in my arms. I thought, ‘Now I am going to lose him’.”
In January, Clayton had a tracheotomy (a tube put through an incision in his windpipe to aid breathing). He cannot be left alone “even for a second” in case the tube falls out or is blocked by mucus. It must be suctioned several times an hour which Gearóid and Ashlene have been trained to do. They want to bring him home to Cork. “There is no need for him to be here any more.”
She worries about the impact on Sorcha and Caleb. “They haven’t had a mother and father for over a year. They’ve lost their brother. They want Clayton home. I hear Sorcha crying herself to sleep.
Begin to heal
“Clayton has missed out on everything: on nurturing, on being held. When we arrive we always get the smile and the hands out,” says Ashlene. “He does cry when we leave. That is tough. If he was in Cork at least ‘bye, bye’ would mean, ‘We’ll see you tomorrow.’ And we as a family could begin to heal.”
