Couple whose daughter is in ‘God’s waiting room’ as she waits for a heart transplant issue a desperate plea for parents to sign their children up as organ donors

• Jodie Woolford, 31, from Chippenham, has issued a plea to help her daughter 
• Read more: Lancashire man, 27, saves six people through organ donation

A couple whose toddler has spent more than a year ‘living’ in hospital awaiting a life-saving heart transplant have issued a desperate plea for more children to become organ donors.

Amelia Bolter, from Chippenham, was just 17-month-olds when her mother took her to the GP for a suspected ear infection only to be told the tot was ‘waiting at God’s door’ and had to be put on a transplant list.

Amelia, now two and a half, was diagnosed in June last year with supraventricular tachycardia – which causes episodes of abnormally fast heart rates.

After being transferred from her local hospital last October, she has spent the past ten months at Great Ormond Street Hospital, London, hooked up to a machine keeping her alive.

Her mother Jodie Woolford, 31, and her partner Rich Bolter, 33, have both signed up to become organ donors since being warned Amelia could face an agonising two-year wait for a suitable match.

But Jodie said they had to speak out as there is a desperate shortage of child donors. 

Jodie Woolford, 31, from Chippenham, has issued a plea to help her daughter Amelia (pictured) 

Amelia, now two and a half, was diagnosed in June last year with supraventricular tachycardia – which causes episodes of abnormally fast heart rates

She said: ‘The difficulty with Amelia’s condition is that finding child donors is incredibly hard, and parents rarely talk about organ donation until an accident has already happened.

‘By then it is usually too late, and the organs are useless. So, we want to urge parents to make a decision now, so that their children, if something happens, can live on.

‘We are not the first people whose child needs an organ transplant, and we won’t be the last. Even if Amelia sadly dies, we’ll try to let her donate what she can to others.’

Amelia was initially taken to her doctors in Chippenham, Wilts by her mother 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 was later rushed to Great Ormond Street on October 30 last year, when she faced several infections including pneumonia, a gut infection and sepsis.

Since then she has undergone several ‘wash outs’ and ‘chamber change’ surgeries to remove blood clots from her heart, and has suffered two strokes.

Jodie said they had to speak out as there is a desperate shortage of child donors

WHAT IS SUPRAVENTRICULAR TACHYCARDIA? 

Supraventricular tachycardia (SVT) occurs when a person’s heart suddenly beats much faster than normal.

This is due to the electrical system that controls the heart’s rhythm not working properly.

A normal resting heart rate is 60-to-100 beats per minute. SVT occurs when the rate rises to more than 100bpm.

A fast heart rate usually lasts just a few minutes but can continue for several hours.

It can happen just once a year or as often as several times a day.

There is not always an obvious trigger, however, fatigue, caffeine, alcohol and drugs can set the condition off.

Most people first experience symptoms at 25-to-40 years old.

Although heart palpitations can be the only symptoms, some patients experience chest pain, fatigue, nausea, vomiting and feeling lightheaded or breathless.

If symptoms last just a few minutes and do not bother the patient, there is no need for treatment.

But if they continue for longer than half-an-hour and cause chest pain with shortness of breath, the patient should be taken to hospital immediately.

When a SVT episode starts to come on, patients should try the Valsalva manoeuvre – take a deep breath, shut the mouth, hold the nose tightly and blow as hard as you can.

Putting your face in ice cold water for a few seconds can also help.

Cutting back on caffeine and alcohol, quitting smoking and getting plenty of rest can also help.

If treatment is required, a small electric shock to the heart, known as cardioversion, can get it back to its normal rhythm.

A catheter ablation – placing thin tubes through a vein or artery into the heart – can correct problems with the electrical system and usually permanently cures the issue.

Despite the horrific challenges though, her defiant parents are still determined to find her a donor – and are urging fellow parents to consider adding their children to donor lists.

She said: ‘Parents should never have to think about outliving their children, but accidents happen and children do get sick.

‘I’ve signed up to become an organ donor, and so has Rich. We’ve even signed up our second daughter, Blossom, who was born during our time in hospital with Amelia.’

Amelia remains 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.

Supported by the Sick Children’s Trust, the family eventually found a place in Great Ormond Street Hospital, where they live in the Trust’s temporary accommodation.

Thanks to the support of nurses and doctors at the hospital, who Amelia thinks of as her uncles and aunties, she has been able to survive her condition – and even started some schooling this year.

Despite the horrific challenges though, her defiant parents are still determined to find her a donor – and are urging fellow parents to consider adding their children to donor lists

Supported by the Sick Children’s Trust, the family found a place in Great Ormond Street Hospital, where they live in the Trust’s temporary accommodation

Jodie said her daughter Amelia is now ‘steady’ and ‘loves school’ even if it’s ‘just an hour a day’ – but is ‘wobbly still’ 

Jodie added: ‘Amelia is steady. She has learned how to crawl and walk independently now, and her bowels have started working again now.

‘She is a bit wobbly still, because she has a wire almost like a lead attached to her at all times to keep her alive, but she loves it there.

‘I’ve only been home once in the whole ten months we have been here, but the hospital has provided us amazing support. I feel safe leaving her in their hands.

‘She loves school, even if it is only for an hour a day. They help her do arts and crafts, and even some ‘cooking’; making sandwiches and fruit salad.

‘It has meant that Rich and I have some time to ourselves too, even if it is just watching some Netflix while she is at school or asleep.

‘It is a bit tragic and sad though, in a good way, that she is so happy here. She thinks of the hospital as her home – which for us is difficult as we wish she was at her real home.’

Jodie is supporting The Grand Appeal and the Sick Children’s Trust in their fundraising efforts, and trying to raise awareness for heart conditions.

Jodie is supporting The Grand Appeal and the Sick Children’s Trust in their fundraising efforts, and trying to raise awareness for heart conditions

She says that the process of signing up to become a donor is ‘quick and easy’ – and urges parents to talk about it before it is too late.

She said: ‘Until we know we have a donor, we just don’t know how we will react. But it would be life changing for us if we were told one was available.

‘If it wasn’t for this machine, Amelia wouldn’t be here. That’s why raising awareness is so important.

‘If she passes away, we will hopefully be able to let her donate her heart valves. For us it’s a comfort of knowing that if something happened, a bit of her would live on through another child.

‘It’d be an amazing gift for us to get a new heart for her, and a selfless act by a bereaved parent. Like us, we hope others would like their own children to live on.

‘Accidents do happen, but your child’s death may save the life of another.’

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