I wasn’t going to let them hide how my Tristan died. I had to fight for the truth

By: Michael O’Farrell

Investigations Editor

EVERY night of his life at home Angela Neiland slept next to her son Tristan. He couldn’t speak and suffered silent epileptic seizures that could be hard to notice.

But by sleeping beside her youngest child, Angela could sense if a seizure was coming.

‘He had to be monitored at all times,’ she says. ‘The only way you would know is his eyes would start going. Sometimes his lips would just go blue.’ As soon as a seizure came on, oxygen had to be administered immediately. At three minutes, medication was required. At five, an ambulance had to be called.

There was no room for error – at all. His life depended on it. Because of this, Angela was reluctant to hand him over to respite care at the age of six – though against her best judgement she did.

It’s a decision she wishes she’d never made.

Tristan interview 4

Tristan – a bundle of curly hair who’d shake his body to music, bang drums endlessly and hunt down his beloved Wotsits and Weetabix no matter where they were hidden – was a very happy child despite his challenges.

‘You’d know from his expressions and actions how fond he was of you. He was just a really affectionate boy,’ Angela recalls with a smile.

In the autumn of 2012 Tristan began staying overnight occasionally at Angels Quest – a respite home run by the St John of God Carmona Service.

By Christmas he’d stayed there a handful of nights without incident. Or so Angela thought. On October 27, 2012 Tristan did suffer a seizure – with no monitor present to raise the alarm – but it was noticed later and he pulled through.

No one informed Angela or her husband, Andrew, of this incident. Next time Tristan had a seizure at Angels Quest – on the night of Saturday January 5, 2013 – his monitor lay unused just feet away.

Angela was watching Sleepless In Seattle at home when she got the call from the respite centre.

‘We’d got to the part when the little boy had gone up to the top of the Empire State building to find his teddy… it was at that part I got the phone call,’ she recalls.

Angela was told Tristan was unconscious and that an ambulance had been called. ‘You hear the words but you don’t really hear the words,’ she admits.

She bundled all of her older children – Zèev, Aryana and Félin – into the car in their bedclothes and rushed to Angels Quest where she saw a fire engine outside.

At Tristan’s room there was a paramedic who held her back. ‘I just knew. I knew Tristan was dead. I saw them working on him and then I just saw them coming out with Tristan on a stretcher.’ It was in Crumlin Children’s Hospital where Angela next saw her son and was joined by her husband.

‘Tristan was on this bed and I picked him up,’ she says. ‘He had gone. He had started to go stiff. We held him and then we had to transfer him to the morgue. We walked into the morgue and I remember being so panicked about leaving him. I was kind of thinking, “God, I can’t leave him on his own. The child’s never on his own. And he’s on his own.

‘I remember speaking to the staff and they said, “He’s fine, he’s fine. There’s going to be somebody here all the time.”‘

At 4am, the devastated mum went home without her son. Bereft and beside herself, she started sorting out the cutlery drawer.

Tristan came home the following Monday and his family dressed him in a Christmas jumper that his brother Zèev had got him as a present. A Christmas jumper in a white coffin.

A priest arrived to console Angela and her family. ‘God needed him back,’ he told her. ‘God doesn’t need him. I need him,’ she cried. The wake was a blur. People came, told nice stories and brought little things that Tristan liked to play with.

Then, a staff member of Tristan’s care team arrived and Angela couldn’t help but ask about the monitor that should have warned of her son’s danger.

‘Why was the SATS monitor not on?’ she asked. ‘Because you told us it was okay not to use it,’ came the reply. ‘Remember you said we could use it if we felt we needed to, and we didn’t need to use it if we didn’t feel it necessary.’ Angela could not fathom what she was hearing.

‘I was like, “I said that?” In my head I was screaming. I was just screaming. I wanted to say, don’t be so bloody stupid. How would I say something like that? I couldn’t say something like that. I know I couldn’t say something like that. It’s absurd.

‘I looked at Tristan in his coffin and I said, no I can’t do this. There’s all these people around. Don’t do this for Tristan even though I wanted to scream and shout at her.’ The Angels Quest employee then gave each of Angela’s children a card which the grieving mother destroyed after she left.

‘I took the cards and ripped them up,’ she recalls. ‘I was so, so upset. It was starting to all fall apart.’ Angela’s loss was so great she could not let her baby boy go and before his funeral she found comfort cuddling up to him each night he was at home.

‘When I went to bed I took Tristan out of his coffin,’ she admits. ‘I slept on the sofa with Tristan. Cold. In the morning I’d get up and put him back in the coffin.’

She thought of hiding him in the house rather than lose him. And when the undertakers came to take Tristan’s coffin, she refused to let them into the house. When they tried to close his coffin, she refused. When they tried to take him outside, she refused.

Then, just at this moment, Tristan’s music therapist called.

Angela held the phone to her son’s ear one last time and together they sang the song they always sang at the beginning of therapy.

It went: ‘Hello Tristan, hello Tristan, hello Tristan, Tristan’s here today.’

The same tune with different words was always sung at the end of therapy: ‘Goodbye Tristan, goodbye Tristan, goodbye Tristan, we’ll see you very soon.’

With that, Angela was convinced to allow the coffin to be closed and she was told she could see him again at the church. She never did. ‘I never saw Tristan again,’ she reveals.

Angela found the courage at Tristan’s funeral to speak of her son and thank the staff at St John of God.

Tristan interview 2

But she knew something was not right – and that feeling grew. She knew Tristan had fought all his life. Now, spurned on by her son’s spirit, it was her time to fight. ‘He was saying to me, “Mom, just do this.”’

She needed answers. She needed the truth, and nothing would stop her. Angela demanded investigations. She phoned the HSE, she phoned Hiqa, and she even managed to reach St John of God group CEO John Pepper when he was away in the US.

‘I really felt like I was a mother who’d just disturbed him with whatever he was doing in the States,’ she says.

In the end Mr Pepper and other managers at St John of God personally apologised. He told her changes would be made and the same thing would never happen to another family again.

But the apologies weren’t enough. And she didn’t believe him.

‘I had to get accountability,’ she says. ‘I needed them to take responsibility over what they’d done. I wasn’t letting them hide this.’

So she asked Phil Gray – the then- director of Carmona Services – to go to gardaí in relation to attempts to rewrite history. The DPP decided there was not enough evidence to prosecute any crime. So Angela took a High Court case with a condition that any settlement had to include an apology.

This week, St John of God settled the case for a confidential sum – after fighting hard in negotiations over the wording of the apology and the whole country saw Angela bravely stand up for her son in a moving interview on RTÉ’s Six One News.

Now, after much counselling, Angela is back in college and exercises regularly as an outlet for ‘all the nega- tive energy’.

A cup for an upcoming competition at her PrimalX Fitness Club will be named after Tristan.

‘When you’re trying to train you can’t cry at the same time,’ she explains. ‘Sometimes all you can do is try to breathe.’

The anger has subsided too.

Gone is the plan to buy a tin of red paint at Woodies to scrawl the words, ‘You killed my son’ on the St John of God wall. She’s also finished with the mediums and psychics who cashed in on her grief. And the social workers, who once worried that she may not be able to manage her other children, no longer call around.

‘I live in a world where I have to believe that Tristan is around me,’ Angela says.

For now, that’s enough. But she also wants to ensure that her son’s death means something. So with the help of her advocate, Jim Reilly, she asked St John of God to allow her to become a member of the board that now monitors standards at Carmona.

St John of God refused.

Tristan interview 3

 

Leave a Reply

Categories

GOT A STORY? CALL 01 5547336 TODAY IN COMPLETE CONFIDENCE.

Advice for whistleblowers