A mum who initially thought her 17-month-old daughter was teething or had an ear infection was told her child needed to be put on a heart transplant list.
Amelia Bolter, now 22-months-old, was taken to her GP by mum Jodie Woolford, 31, on June 16 this year. Jodie thought Amelia was suffering from an ear infection or teething issues as she kept rubbing her ear, but was shocked when the doctor found her heart rate racing between at 180-220 beats per minute.
She was immediately rushed to Bath Hospital, before being transferred to Bristol Children's hospital the same day. She is now at Great Ormond Street where doctors have told her parents to be prepared for a two year wait before Amelia can go home with a new heart.
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She was rushed there on October 30, when she faced several infections including pneumonia, a gut infection and sepsis. Amelia, Jodie, who is currently 35 weeks pregnant, and her partner Rich Bolter, 32, have been told they could be living at the hospital for two years whilst Amelia awaits a heart transplant match.
Jodie said: "We're emotionally drained, you just think why is this happening to us, what have we done that's so bad to end up here? I wish I could take the pain away from her, she's so tiny and no child should have to go through all this.
"I took her to the doctors back in June because she was rubbing her ear, I just thought it was an ear infection or a teething problem, but when the doctor checked her they said her heart was beating at 180 BPM.
"We went to the closest hospital in Bath, who said her heart rate was at 210, so Bristol Children's hospital sent an ambulance straight away."
Amelia was experiencing Supraventricular tachycardia (SVT), which is episodes of abnormally fast heart rates. She was diagnosed with the toddler poor heart functioning and dilated cardiomyopathy, with BNP levels 44 times over what is considered normal.
Jodie said: "We didn't really understand what was going on, she was basically at the heart failure. We were told she was waiting at God's door and that every hour with her was a blessing.
"The hospital asked if we wanted a priest's blessing too but we were in disbelief at that point. She was doing well for about 16 weeks, we were even on the ward prepared to go home - but then she took a turn for the worse."
On October 2, Amelia was rushed back to intensive care after suffering from sepsis, pneumonia, a gut infection and an adverse reaction to her flu jab. After almost a month of waiting for a bed, she was moved to Great Ormond Street Hospital earlier this month.
Jodie and Rich were told that for Amelia to survive, she would need a heart transplant and a VAD (ventricular assist device). However, a transplant match for Amelia is rare, as it would need to be the right heart for her weight and blood type, and her parents have been told they could be living at the hospital for two years.
Jodie said: "To hear we could lose her a second time was absolutely heartbreaking. They've cleared all her blood clots and infections, and she was doing a lot better for two weeks.
"On Tuesday they took her breathing tube out and we got to have our first cuddles in months on Friday. She was smiling and trying to laugh, but in the evening she took a turn for the worse again and went into cardiac arrest.
"We feel like we're starting at square one again, and we're just waiting and waiting like sitting ducks. Amelia is the cheekiest, most smiley girl you'd ever meet, I'd do anything to be in her position, it shouldn't be my daughter there."
In the meantime, Rich's friend, Joseph Hylands, launched a fundraiser for Amelia and The Bristol Children's Hospital. Jodie said: "The staff have been absolutely incredible. They've come in on days off to do paperwork for her and gone above and beyond.
"The response to the fundraiser has been unreal, it started as a £500 target but we've raised over £5,000 now. We know times are tough and it's coming up to Christmas so we weren't expecting it at all. All I can say is while we prepare for the worst but hope for the best, never take any moment for granted.
"Even holding her hand and listening to her little noises is something we see as a precious moment."
You can donate to the fundraiser here
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