A mum whose 13-year-old daughter underwent a heart transplant in Newcastle-Upon-Tyne earlier this year has spoken about the importance of raising awareness about child organ donation.
Marking NHS Organ Donation Week 2023, mum of eight Emma Austin, 43, from Shrewsbury described the donor heart that daughter Olivia received in May as “an incredible gift” that has provided the chance of a normal life after a decade of struggle. Emma said:
“Without the selfless act of our donor and their family, our daughter would not be with us now. She was getting too poorly to wait any longer. We strongly believe that if you are willing to take the gift of life then you should be willing to give the gift of life. Because of our donor, Olivia will one day be able to get on a horse again and do all the things she loves, like playing with her siblings. Without that incredible gift, it may never have happened.”
Having been in a state of heart failure since she was a baby, Olivia Austin’s health rapidly deteriorated in August 2022 when she began complaining of chest pains. A check-up at Birmingham Children’s Hospital revealed that her condition had become severe, and she would be assessed for transplant at the renowned cardiac unit at the Freeman Hospital in Newcastle, five hours away, where Olivia was placed on the donor heart wait list before returning home. Emma said:
“From that point onwards, we felt like we were living on a knife-edge. Although we were back home in Shrewsbury, we were constantly waiting for ‘the call’, with bags packed in readiness. We felt like we couldn’t do anything with Olivia’s six siblings, and being pregnant with our eight child there was also concern about what we would do should a donor heart and the baby come at the same time. We didn’t know how we would cope, or even where I would stay so far away from home. We only knew that my husband Dave (49) would need to take time off work to look after our children, when the time came.”
The call they had been waiting for came at 7.15am on a Saturday morning, with an ambulance arriving an hour later to take Olivia and Emma to Newcastle. Emma said:
“Many thoughts went through my head on that journey, from worrying whether Olivia would survive the surgery to feeling a sense of guilt that someone had lost their life. I also felt thankful that in someone’s darkest hour a family had decided to donate the organs of a loved one to help save others. As thankful as I was that Olivia’s gift was coming, I was extremely scared and cried constantly.”
Olivia spent the next month in hospital, during which time Emma stayed at Scott House, a ‘Home from Home’ run by The Sick Children’s Trust charity. Located just minutes from the ward and free of charge, Scott House proved to be a place of reassurance both for Emma in Newcastle and back home in Shrewsbury, where husband Dave – a maintenance manager in a nursing home – was worried that his heavily pregnant wife might be sat in a hospital corridor, upset and alone. Emma said:
“Without Scott House, I honestly don’t know what I would have done. As well as a comfortable bed and a nice clean bathroom, there was even a direct phone line to intensive care and the ward. More useful than anything was the laundry facilities. I couldn’t bring much with us and couldn’t to get out to buy new things, so the chance to wash mine and Olivia’s clothes was so important. I also made good use of the kitchen facilities, cooking something a bit more nutritious rather than relying on toast or sandwiches from the shop. I had to be close to Olivia, and Scott house made that happen. She even stayed there for a while, in their dedicated transplant flat before returning home, which was wonderful. The staff were also fantastic, always helpful, friendly, and willing to support in any way they could.”
Olivia finally returned home in early June, reuniting with beloved siblings Charlie (14), Harry (11), Alfie (9), Matthew (7), Rosie (6) and Nellie (2). A few weeks later, her new baby brother, Ralphie, entered the world. It was a joyous moment for Olivia, who stated during recovery that her one wish was to be able to hold her baby brother. Talking about her own transplant journey, Olivia said:
“I feel so lucky that I have received a new heart. I know some people wait for such a long time, but for me it was only a few months. I felt so poorly, and I couldn’t do things that I wanted to do, but now I can soon go back horse riding and playing with my sisters and brothers. I’m still getting used to having a new heart. It’s only been 17 weeks so I’m still getting a bit breathless as my body is not used to having a heart that isn’t in failure. The two hospitals (Birmingham and Newcastle) keep a constant eye on me, so that’s good.”
Emma said: “The hospital appointments are still constant. Scott House continues to help by allowing us to stay over the night before our Newcastle clinic appointments, so we don’t have to do all that travelling in one day. We feel so grateful. We would find it hard to be paying for a hotel each time, especially when we put so much petrol in the car. Without The Sick Children’s Trust things would have been so much more stressful, so we are forever thankful. We cannot stress enough how valuable the charity is to families like ours.”
For further information about The Sick Children’s Trust, please visit sickchildrenstrust.org.
Olivia with little sister Nellie. Credit: Emma Austin.