A mum whose infant daughter is awaiting a heart transplant in hospital has spoken about the importance of awareness about child organ donation.
After suffering heart failure in June of last year, two-year-old Amelia Bolter was transferred from Bristol Children’s Hospital to London’s Great Ormond Street Hospital (GOSH) in October.
She remains there, connected to a Berlin Ventricular Assist Device, an air driven pump that takes over the work of one side of the heart while the other continues to work naturally.
Amelia’s mum Jodie Woolford, 31, described the past 15 months as a “tough journey”, admitting that some moments have been extremely difficult.
Marking NHS Organ Donation Week 2023, Jodie said: “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 suffering from dilated cardiomyopathy, a type of heart failure where the heart becomes enlarged and cannot pump blood effectively. In addition to heart failure, Amelia has also suffered from sepsis, pneumonia and an infection to her Hickman line, a tube inserted into her chest to allow medication to be given directly to her bloodstream.
Jodie, from Chippenham, said: “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.”
For the past 10 months, Jodie and her partner Rich Bolter, 33, have been staying at Guilford Street House, a ‘Home from Home’ run by The Sick Children’s Trust charity. It is located a few minutes’ walk from Amelia’s hospital bedside, and Jodie described Guilford Street House as “...the most incredible lifeline for us for so many reasons."
She said: “I was seven months pregnant when Amelia arrived at GOSH, so we always knew there was a chance 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 has 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.
“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.
“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.”
For further information about The Sick Children’s Trust, people can visit sickchildrenstrust.org
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