Toddler faces two-year wait at Great Ormond Street for heart transplant after mum suspected ear infection

The mum of a toddler rushed to Bristol Children’s Hospital after being told she was ‘waiting at God’s door’ has been told she faces a two-year wait at Great Ormond Street before she can go home with a new heart.

Jodie Woolford took her 17-month-old daughter, Amelia to the GP for a suspected ear infection in June after she had persisted in rubbing her ear and was shocked when doctors found her heart racing between 180-220 beats per minute. She was rushed to Bath Hospital, before being transferred to Bristol Children’s hospital the same day. She has been at Great Ormond Street since 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, 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 doctor 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. At Bristol Children’s Hospital, she was diagnosed with toddler poor heart functioning and dilated cardiomyopathy - with BNP levels 44 times over normal levels.

Jodie added: “We didn’t 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.

“To hear we could lose her a second time was heartbreaking,” Jodie said. “In London, they’ve cleared all her blood clots and infections, and she was doing a lot better for two weeks. On Tuesday (November 22 )they took her breathing tube out and we got to have our first cuddles in months on Friday (November 25).

“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, a fundraiser for Amelia and The Bristol Children’s Hospital has been launched with the target of £6,000 for the “absolutely incredible” staff who came in on days off to complete paperwork for Amelia. Originally, a £500 target was set but the amount raised has quickly climbed to ten times that amount. You can donate to the fundraiser here: www.justgiving.com/crowdfunding/ameliab