Caylan Milligan and Charlotte Curran would have been preparing for their son to start nursery at the end of the month - instead, they today visited his graveside.
Jaiden Milligan died in hospital on Sunday July 17, after attempts to resuscitate the three-year-old were unsuccessful. His parents, both from Downpatrick, are now hoping that they get answers to questions they have surrounding the child's death.
On Thursday July 14, they took him to the Ulster Hospital A&E after noticing he was unwell, not eating his food and coughing. They say he was sent home after a five minutes assessment and given a probable diagnosis of a sinus infection. He died three days later, with preliminary results showing he had multiple problems with his heart.
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Speaking to Belfast Live, the Downpatrick parents say they believe their son may have had a better chance of a fight, if he had of been given more tests in hospital.
"We noticed that he just wasn't well on the Thursday so we took him to A&E in the Ulster Hospital, and they listened to his chest, took his temperature, looked in his ears and back of his throat," Caylan and Charlotte said.
"They said everything was clear and we were sent home and they said he had a sinus infection. We weren't given anything for it, so we went out and bought our own stuff. We were told to bring him back if he got worse, so on the Saturday we called the out of hours and were advised to take him back to the Ulster.
"Within five minutes he was seen by triage. He was then taken straight to paediatrics and was seen to. The doctors were doing blood tests on him, scans, ECG and a chest X-RAY which showed fluid in the lungs and around his heart. They said there was something wrong, either an infection or his heart, and it came back that is was his heart so we were sent straight to the Royal by ambulance.
"At this stage, Jaiden knew something was wrong but he sat there like a champion and let the doctors do whatever they needed to do. He was in the PICU and the team there were really good with him, talking away to him and making him feel comfortable.
"The doctors took us into a side room and told us that Jaiden's heart was in serious trouble. They wanted to do a procedure where they put two rods into the centre of his hips, one in the arterial line and the other was for fluids. The medication wasn't working so they kept him in overnight on the Saturday."
The pair went home to get Jaiden clean clothes and toys for him to play with. They arrived to Downpatrick at around 1am and were called back to the Royal at 6am, as Jaiden was becoming unsettled.
After speaking with a cardiologist, they say they were told that Jaiden's body was under a lot pressure and they were asked if they'd be happy for him to be placed into an induced coma.
"Jaiden was put into the coma on Sunday morning after we give it the go ahead," Caylan added.
"We had to leave the room for them to do that, but we were brought in again after and the staff said we could go in and out as we pleased. Our families were coming up to, to check how things were going.
"We were told that the machine that was needed for Jaiden was in Dublin, they didn't have it in Belfast. We were just waiting on the team from Dublin coming to get him. At around 2:30pm, we were at the front door and two nurses came and told us to come up straight away, that they were doing CPR on him.
"They worked on him for about half an hour, they were fantastic. They said they were going to keep trying, and let us down to hold his hand and we had to let him go. Jaiden died at 3:10pm on Sunday.
"The system is broken. Our child suffered for that long and we didn't know. We want to know why our son was sent home within five minutes on the Thursday. We just want answers, and we know we have to wait for the full coroner's finding to be sent to us, but we just want to know what happened to our son.
"The coroner kept his heart to run tests, so our son was buried without a heart. That is hard to take."
Belfast Live was given a copy of Jaiden's 'Evidence of Death Certificate' which shows that the Pathologist’s preliminary findings following the Post Mortem examination are "Dilated Cardiomyopathy, Global necrosis of Myocardium, congestive cardiac failure and pulmonary oedema".
The pair, who are from the Model Farm and Flying Horse estates in the town, say the community has rallied round them, in ways they never thought it would.
They say they have enough milk, sandwiches and biscuits to last them a lifetime, and have been heavily supported by Jaiden's Sure Start school and should-be nursery, St Colmcille's.
Jaiden's sister Amelia's school, St Brigid's Primary School in Downpatrick have also vowed to be there to support the six-year-old as she navigates through life without her brother. Caylan, who works in Poundland, hailed his employer, who paid for a floral tribute to Jaiden, which was £400. The company has offered Caylan as much time off work as he needs, and help towards the costs of the funeral.
Caylan and Charlotte said they will always remember their baby boy as a "happy, pleasant wee child" who loved to be playing in the dirt with his tractors.
"He was just such a good child," they added.
"It is never going to be the same without him. Our house will never be the same. He really was a mummy's boy, and a typical wee boy who would happily sit playing on his own for hours.
In a statement from the South Eastern Trust, a spokesperson said: "The loss of a child at any time is heart-breaking and we acknowledge the pain and heartache Jaiden’s parents, Caylan and Charlotte are currently experiencing. We would like to express our deepest condolences at this sad time.
"The Trust is aware of Jaiden’s case and will be investigating it fully. We will be in contact with Jaiden’s parents as soon as the outcome of the investigation is complete.
"However, in the meantime, we would welcome the opportunity to meet and discuss any concerns the family may have surrounding Jaiden’s care and treatment. It would not be appropriate for the Trust to comment on the specifics of the investigation."
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