Family will live at hospital while little Amelia waits for new heart

AWILTSHIRE family have had their lives turned upside down after thinking their little girl had an ear infection – only to be told she needs a heart transplant.

Back in June, 17-month-old Amelia Bolter was rubbing her ear so her parents visited their local doctor’s surgery.

There they found out her heart rate was between 180 and 220. The next day they were told the last thing any parent wants to hear: “Prepare for the worst.”

Mum Jodie Woolford, from Chippenham, said: “We didn’t have a clue about any of it. We thought it was her ears, but they were fine so we thought maybe it was a little bug or teething – but it was her heart.”

It has now been almost two months since Jodie, who is 35 weeks pregnant, and partner Rich Bolter, have been able to hug their little girl.

Following their GP visit, the parents were referred to the Royal United Hospital in Bath as Amelia was experiencing episodes of an abnormally fast heart rate, called supraventricular tachycardia (SVT).

Two hours later, they were rushed to Bristol Children’s Hospital where she was diagnosed with dilated cardiomyopathy and poor heart functioning.

The toddler’s BNP – a hormone released by the heart when the ventricles are stretched – was almost 44 times over the normal levels for her age. Amelia fought for her life in the intensive care unit for 15 days. Eventually, she was moved into the Dolphin ward where she gradually improved over the next 19 weeks. Her BNP fell but still remained extremely high.

Her parents thought they would finally be taking her home at the end of September. But by October 1, Amelia’s health was deteriorating rapidly, as she faced several infections including sepsis, pneumonia, an infection on her Hickman line and a gut infection.

Despite the removal of her Hickman line, Amelia deteriorated further and she has been sedated and ventilated ever since. Due to her gut infection, she has not been fed, making it difficult for her to improve.

On October 30, Amelia was transferred to Great Ormond Street Hospital (GOSH) where her parents were told she would need to get on the heart transplant list and that she would require a VAD (ventricular assist device) to help her heart function and blood flow.

Rich and Jodie, both in their 30s, have been told that they could be living at the hospital for up to two years while they wait for the right heart for her weight and blood type.

“It’s been an emotional rollercoaster. We thought we’d be home by the end of September from Bristol, we were just waiting for her to come off of some of her medication. But then she caught several infections.

“We can’t thank Bristol enough. Even the team at GOTH has said that to have kept Amelia alive without the

You’ve got two options as a parent; you’re either on the rollercoaster or you walk away and that was never an option for us. We just go with the motions and treasure every little moment. We prepare for the worst and hope for the best. You’ve got to take every day as it comes

JODIE WOOLFORD

equipment they have here is nothing short of amazing. We are so lucky to have the NHS.

“Our consultant was ringing us up at 11pm at night, outside of her working hours to give us advice and guidance. On her day off, when she’d popped in to do some paper work, was the day Amelia’s infections hit and she stayed to treat her. We don’t know where to begin in thanking the NHS.”

Since being at GOSH, and now 22 months old, Amelia has started to improve with no more infections and her BNP is now down, but still more than triple what it should be.

“The VAD hasn’t been needed at the moment but she will stay on the heart transplant list.”

Rich’s best friend, Joseph Hylands, has launched a fundraiser for Amelia and Bristol Children’s Hospital to help the family through this difficult time and to say thank you to the hospital for saving her life twice and going “above and beyond”.

For the next two years, Jodie and Rich are looking at living at or near the hospital while their baby girl waits for a new heart. While she is in the ICU, they have accommodation on site, and are able to visit Amelia very easily. They arrive at around 9am every day to ensure Jodie is resting well during her pregnancy.

A ward round takes place soon after, and then they sit by her bed waiting for her to wake up. The parents have ample time to play with their little girl, and a physio visits between her naps.

“She is like a newborn again, she can’t hold her head up and she’s lost all of her words,” Jodie said.

She and Rich leave the hospital in the evening to eat, shower and rest and then do it all again the next day.

“You’ve got two options as a parent; you’re either on the rollercoaster or you walk away and that was never an option for us. We just go with the motions and treasure every little moment. We prepare for the worst and hope for the best. You’ve got to take every day as it comes and live for every little sound she makes.”

To donate to the fundraiser, visit www.justgiving.com/crowdfunding/ameliab