Ollie's Story

Ollie is currently awaiting a heart transplant, there are 7 other little ones ahead of Ollie also waiting for a transplant. Ollie's parents, Stephen and Beckie, have been told this may take a year, or even longer, but Ollie will need to remain in hospital until then.

This fundraiser is being set up for awareness of Hypoplastic Left Heart Syndrome, Ollie's journey, and to raise funds for all the charities that are playing, and have played, such a crucial part in the family's life. Without these organisations, life would have been a lot more difficult during the most stressful times. All money donated will be split between the following charities: Ronald McDonald House, Cardiff, Noah's Ark Children's Hospital, Great Ormond Street Hospital, Wallace and Gromit's Children's Charity.

Here is some information about Ollie's story so far, in the words of his parents, Stephen and Beckie.

We found out at the 21 week scan that Ollie had a condition called Hypoplastic Left Heart Syndrome. The first 21 weeks were so exciting, but when you get told that your baby won't survive labour, your whole world crashes down around you. The doctors from Cardiff were telling us what could happen if we went ahead with the pregnancy, he might not survive, brain damage, etc. but we both said we wanted to give Ollie a chance of having a life.

It was nice to have a little positive news from the doctors after having more scans and bloods as we were getting closer to giving birth, and all went well. Ollie Gordon-Mahoney was born on 04-09-2020 at 17:05 at St Michael's Hospital in Bristol, weighing 5lb 1oz - he was tiny!

He then got transferred down the hill to Bristol Royal Hospital for Children as his heart was so weak and needed oxygen, they thought they might need to operate straight away.

It wasn’t until September 11th he had the first procedure of three in the first 5 years of his life, the first one being the Norwood procedure. That day felt like a lifetime, it was horrendous, our emotions were everywhere. He was in theatre for 8/9 hours then all the theatre equipment came out with him as he wasn’t coping well, they said he might not survive, and a few hours later they had to do more work to his heart and again, his heart stopped for 9 minutes. They phoned us to tell us the news and we were horrified, we just broke down. They had to do more work on his valve again, and then he was on life support; ECHMO for 4 days and the Ventilator for 9 days. His chest had to be kept open for most of the week to check there were no leaks and that everything was ok before closing it.

We were broken for a week or so but as we saw Ollie open his eyes it was like a miracle, there isn’t a word to describe how we felt at the time!! He continued to get stronger and stronger. After being in hospital for 6 weeks and 3 days, he was then transferred to Cardiff Hospital for Children where he spent 4 days there being monitored. Once he had the all clear we were able to go home to see all the family, and Ollie got to meet everyone for the first time, it was lovely!

Ollie was to have his Glen Procedure, the 2nd procedure of the three, on 23rd March 2021 at Bristol Royal Hospital for Children.

Thankfully the operation went well, the worst part again was the 8hrs while he was in theatre, it was horrendous but when we saw him our eyes lit up, we were so relieved that everything had gone well! He was doing so well that we only stayed in hospital for 6 days, and he came out having learnt to sit up, it was amazing!

From that day we came home he has been a happy, handsome little boy, he isn’t the best sleeper but who is. He will get up in the morning, play all day and have fun, he loves food and always wants loads of cuddles.

Ollie was unwell before he went into hospital, about 9 days before, but we thought it was down to him teething and the thrush in his mouth, he had no temperature over them days. The day before we took him into hospital he was sleepy, he didn’t want food and only took about 11 oz of milk. He was cwtching all day and sleeping, this wasn’t normal at all as he just loves playing from first thing in the morning until night, with a nap in the afternoon.

On Saturday 29th January 2022 he still wasn’t taking feeds and was sleeping a lot. We phoned Morriston Hospital and told them what was wrong, they said to bring him straight in. When we arrived they checked him over checked his SATs and everything was ok, they took a swab to check for COVID or other viruses and the machine picked up 2 other viruses, because of this they thought it was the virus causing him to feel so unwell, alongside being dehydrated. On the second night of Ollie staying there, they carried out blood tests and an echo, and that’s when the doctor told us he has heart failure. Beckie was staying with Ollie in the hospital, and when she phoned to tell me we just broke down in tears for an hour or so, we were devastated as we thought he was doing so well.

On the 3rd night, Ollie was getting worse and the watch team from Cardiff had to collect him. He had to be sedated and put on a ventilator as he was so weak. When we got to Cardiff Children’s Hospital he went straight into intensive care, they carried out another ECHO and told us his function is really bad and that he has to stay on the ventilator and medication was required to give his heart a break.

On top of this, he tested positive for COVID and was in a cubicle on his own.

He came off the ventilator on Thursday 10th February, he now has an oxygen full face mask to support his heart, which Ollie doesn’t mind.

But because he was having so many drugs he is withdrawing badly, so they are needing to wean him off slowly.

Monday 14th we were told by cardiologists that his heart function was getting worse, again we were horrified to hear this news.

Great Ormond Street Children’s Hospital contacted us on the 15th of February to discuss Ollie having a heart transplant, as this is the only option to keep him alive.

We were told that he needs blood tests and further ECHO’s to make sure he is as well as possible going into a heart transplant. If the risks are too high, and he could die, then they will not operate. They also told us that we could be waiting for a year, possibly longer, as there are 7 other children also waiting for a Heart Transplant around the country in other hospitals. They also can't say if Ollie will survive while waiting for a heart, but all we can do as parents is pray and hope for a miracle.

Cardiff Children’s Hospital is keeping Ollie safe, stable and comfortable at the moment, that is all we can ask for.

All money raised will be donated to the charities mentioned as they are all amazing, but they need more funding to continue to help sick children, and to keep families together.