Ollie’s story

“Damien and I truly believe that if we didn’t have that time, I don’t think we’d have been able to come to terms with Ollie’s death.” – Riona (Ollie’s mum).

During a routine pregnancy scan, mum-to-be, Riona Grant, and her husband, Damien, were told their unborn son had a severe heart condition, Hypoplastic Left Heart Syndrome, and would need major surgery within days of his birth.

So as soon as Ollie was born, the family, who are from Kilcoo, a village in Northern Ireland, flew to England where their newborn baby underwent open heart surgery at Birmingham Children’s Hospital at seven days old.

Riona explained:

“Ollie had a very rocky road those first few months and, barring a few odd days, he never made it out of hospital. Then, at 12 weeks, he suffered a massive stroke while in Birmingham.”

Ollie was left with mobility issues and complex medical conditions, including cerebral palsy and epilepsy. He had his second open heart surgery at six months old, which resulted in additional complications.

Riona said:

“Ollie’s heart function significantly deteriorated and he was put on the urgent heart transplant list. But three months later – thanks to a lot of medical intervention and support from the doctors and nurses in Birmingham and Belfast – his heart function regained and he was able to be taken off the list.”

Despite such a challenging start to his life, Ollie was a joy to be around and, according to his mum, lit up every room he entered:

“He had such a beautiful energy about him. He was so happy, and although he was non-verbal, he communicated in his own way. Everybody who met Ollie instantly fell in love with him. He loved music and being outside.”

On 30th October 2022 – a few weeks after Ollie’s fourth birthday, the family travelled to the North East of England where Ollie would have his third open heart surgery at Newcastle Freeman Hospital. The family stayed in the hospital’s family accommodation.

Sadly, Ollie suffered postop complications once more and he was again listed on the urgent transplant list.

At the start of 2023, Ollie was still in the Freeman Hospital when his condition severely deteriorated and a CT scan showed he had suffered a catastrophic stroke.

Ollie died on 13th January surrounded by his mum, dad, sisters (five-year-old Aria and one-year-old Lottie), grandparents Helen and Barry, and uncle and auntie, Brian and Lauren.

For the family, their devastation was compounded by the fact they were away from their home, family and friends.

The four-year-old’s body was moved to the hospital morgue where the family were told they would need to book an appointment to visit him.

Desperate to remain by Ollie’s side, they asked if there was any other option. The hospital suggested St Oswald’s Hospice.

Riona recalled:

“The hospital phoned the hospice and the response was life-changing for us. They said they could take Ollie and put him in a cold cot where we could visit him, whenever we liked, and that the whole family could stay in the family accommodation.

“The team were wonderful. They washed and dressed Ollie and they brought the family food, which meant we could stay with him throughout.”

Having that family time with Ollie in a calm and relaxed environment meant a huge amount to Riona and her close-knit family.

She said:

“We’ve been away for three months and so we knew, once we got back to Ireland, we would be bombarded by all our family and friends who would want to see us. So to have that one-to-one time with our son was invaluable.

“Ollie had been attached to so many pipes, tubes and machinery from October until he passed away, and so those few days, where you could just see him completely free, meant so much.

“Damien and I truly believe that if we didn’t have that time, I don’t think we’d have been able to come to terms with Ollie’s death.”

Our team helped find a funeral director for the family and when Ollie’s body was moved to the Royal Victoria Infirmary Hospital for post-mortem checks, the family stayed at the hospice for the next five days before the whole family flew home to Northern Ireland.

Riona added:

“The hospice took all the really horrible phone calls and did all the difficult stuff. They made it as streamlined as possible and less heart-breaking for us.”

Mum, Riona, can’t thank the St Oswald’s Hospice team enough for what they did for Ollie and the family:

“I don’t think I’ll ever find enough words to thank them. They’ll always have a place in our hearts. We’re forever grateful for the support that they showed us and Ollie. They’re like superheroes.”

Holly Smith, Acting Matron at our Children and Young Adult’s Unit, added:

“The death of a child is devastating for any family but to be away from home makes it even more difficult. We got to know the Grants over the week, especially Ollie’s sisters, and they are the most beautiful family. To be able to step in and help with arrangements while letting them have treasured time with Ollie, was incredibly important to all the team.”

Since returning to Northern Ireland, the Grant family have held several events to help build awareness for organ donations and raise funds to be split between the four charities that impacted Ollie and the family’s lives – including St Oswald’s Hospice.

Riona explained:

“We’ve held two charity events, including Ollie’s Big Breakfast at a local restaurant where people came and had food and there was a DJ playing music and a raffle.

“We’ve also designed and sold T-shirts advertising the importance of organ donation, and our local football team wore special Ollie jerseys to warm up for the final they played this summer.”

Although the family has experienced unimaginable tragedy, Riona is always reminded of the enormous impact Ollie made during his short life.

She concluded:

“Ollie was an inspiration. He taught us some serious life lessons and he’s made us better people. We talk about him every day. He was just perfect.”

If you’d like to support the important work of St Oswald’s Hospice for families like Ollie’s, please visit our Trail Champion page for ways to get involved, or make a donation here.