On 16 June 2022, I took my one-year-old daughter Amelia to the doctors with an ear infection. The doctor noticed that her heart rate was extremely high and immediately phoned Royal United Hospital in Bath, who suspected she might have bronchitis and told us to bring her in as soon as we could. They were really concerned about her heart and sent her to Bristol Children’s Hospital, where she was diagnosed with dilated cardiomyopathy, a type of heart failure where the heart becomes enlarged and cannot pump blood effectively. It was devastating news for both me and Rich, my partner.
Mum Jodie Woolford cradling daughter Amelia. Credit: Jodie Woolford.
Over the next four months, Amelia slowly deteriorated, suffering from an infection to her Hickman line, which had been inserted into her chest to allow medication to be given directly to her bloodstream, as well as picking up sepsis and pneumonia. With Amelia getting increasingly poorly, we were told that she needed to go to Great Ormond Street Hospital, 100 miles away from our home in Chippenham, to be placed on a Berlin Heart, which would take the pressure off her own heart while she waited for a transplant.
After waiting many weeks for a bed to become available, Amelia was finally transferred to GOSH on 30 October. Ten months later, Amelia is still a patient there waiting for a new heart and the gift of life that comes with it. Since 1 November we have been staying at Guilford Street House, a ‘Home from Home’ run by The Sick Children’s Trust, which has been the most incredible lifeline for us for so many reasons.
I was seven months pregnant when Amelia arrived at GOSH, so we always knew there was a chance that I might end up having the baby here in London. Our second daughter, Blossom, arrived two days before Christmas, being born around 20 minutes away from GOSH. She is now eight months old and never been to our home in Chippenham – Guilford Street House is the only home she has ever known, and she absolutely loves it here. I walked in with her in my belly and now she is crawling around the house. I am fairly sure that she will be walking when we eventually leave this place, which is amazing when you think about it. The staff here at the house absolutely adore her, and they have been so supportive throughout this situation. They are wonderful people, and they make us feel so welcome. It is just like being at home.
Amelia and baby sister Blossom, who lives with mum Jodie at our ‘Home from Home’ Guilford Street House. Credit: Jodie Woolford.
As well keeping us close to Amelia and providing a wonderful place to look after our baby, Guilford Street House has been an absolute godsend for Rich. He is a postal worker and has been transferred from Chippenham to London so he can continue working while all this is going on. This has really eased our money worries, as while the ‘Home from Home’ is free, we still have bills to pay for our place back home in Chippenham as well as food, clothing, and everything else. I honestly do not know what we would do without this place.
It has been a long wait so far and so much as happened. We were told that it could be anywhere between 12 to 18 months, and obviously we are approaching that period now, but you just never know when it could happen. We speak to other families with children who have received organs, and all the stories are different in terms of how long they have waited. Amelia’s time will come, it is about finding a match for her.
It has been a tough journey so far, with some moments tougher than others. These circumstances are never going to be easy, especially when it comes to transplants and organ donation. It is so hard to think that another child must pass away, with the parents of that child providing organs so others like Amelia, who can only receive a child’s heart, get their chance. I think one person passing away saves seven other lives, so it is so important for people to think about organ donation, even though it is incredibly hard to do it. If people talk about it more then perhaps there is more of a chance of organs being donated, should the worst happen. It is a tough one, but we will wait as long as we need to.
Amelia is getting on okay, although she is bored. She thinks GOSH is her home, so it is all good. She is on the ward permanently. We are just trying to live life as best we can here at Guilford Street House and GOSH, raising our kids like we would do at home although in a very different environment. We cannot thank The Sick Children’s Trust enough for everything they are doing to support us
Jodie Woolford, Amelia’s mum
Dad Rich and mum Jodie with Amelia and Blossom. Credit: Jodie Woolford.