Brave young Ashton had to be plugged in to the mains to stay alive

Mum’s agony: ‘I had to say goodbye to my little boy. I never thought I’d see him alive again’

Through tears, Shanna Hutcheson whispered the words every mum dreads.

As surgeons prepared to carry out last hope heart surgery on her dying toddler Ashton, she put her lips to his ears and, trembling, said: “I want to see you come through this my baby, but if not, goodbye. Mummy loves you so much.”

Today, as three-year-old Ashton the first child in Britain to be fitted with HeartWare, an electric and battery pump that acts for his heart recovers in Newcastle’s Freeman Hospital, his mum Shanna, 22, from Aberdeen tells The Sunday Post: “The surgery was his last hope. He is still a very sick little boy, but it’s hoped the pump will keep him alive until a heart becomes available for transplant.

“It means that at home the pack that powers the pump and is attached by a wire into his body would be plugged into the mains. We’d have to plug him in at home and use the batteries when we go out.

“But even though my mum, his grandad and I are trained in how to use it, doctors don’t want to let Ashton go home yet. This procedure has only ever been carried out on one child in the world before. We just have to wait.”

And Shanna reveals that her wee boy has, for the first time since being admitted to the hospital on January 20, left the grounds to go to the park powered by his batteries.

A smile plays on her lips as recalls precious moments she thought she’d never again see. “Ashton loved it. He was in his wheelchair but was giggling and laughing. He was so chuffed with feeding the ducks.

“I never thought I’d get my little boy back I really thought he would die.

“Before he had the surgery, doctors told me I had two choices take him home to die peacefully or put him through an operation where there was a strong chance he might not survive anyway. I told them to do whatever it took to save him.

“What else could I do? When I whispered ‘goodbye’ I was in bits. My mum told me not to say it, but I thought it would be my only chance.

“If he died on the operating table and I hadn’t said goodbye I’d regret it for the rest of my life.”

Shanna, who says Ashton’s fight for a normal life will only begin in earnest when he has a heart transplant, is appealing to Scots to sign up for organ donation.

Figures just released by NHS England show that 2013 saw the highest number of people south of the border donating organs after death and the highest number of transplants.

Donations in Scotland are also at an all-time high with a 31% increase in the number of donors.

But single mum Shanna says more needs to be done and too many people die waiting for organs.

“Many of my friends and even strangers who have heard about Ashton have signed up for organ donation,” she says.

“But everyone who is able to needs to do it. It’s sad when someone dies, but one person’s organs can save several other lives.”

Ashton’s nightmare began in October last year.

Shanna recalls: “Ashton is usually hyper, but he was sleeping all day and not eating. He was also up all night screaming with pains in his tummy. I took him to the GP’s surgery and they diagnosed constipation and sent him home.

“I gave him laxatives, but I just knew he wasn’t right so I took him back. This time I saw a locum doctor who said there was something wrong and sent us straight to the sick children’s hospital in Aberdeen.

“I was later told by doctors that if I hadn’t trusted my instincts he would have been dead.”

The Royal Aberdeen Children’s Hospital diagnosed an enlarged liver of which stomach pain was a symptom caused by a heart problem. They finally diagnosed the rare condition Dilated Cardiomyopathy, which usually only affects adults.

“They told me he could die,” says Shanna. “His heart was not pumping, it was twitching. His organs were failing. I remember at that point just screaming out ‘he is going to die’ and falling to the ground. It was too much to take in.”

Ashton was taken by air ambulance to Glasgow’s Yorkhill Hospital where doctors gave him a one in three chance of survival. The following weeks were a blur of hospital admissions and high dependency and intensive care units. Ashton became so poorly that doctors told Shanna he only had 24 hours to live.

“I had him so young and I couldn’t imagine what life would be like with a baby. Now I was losing him, I couldn’t picture my life without him. But I wasn’t allowed to hold him in my arms and cuddle him I could have given him an infection.

“I just had to watch while he slipped away. I cried and I screamed. That’s when they told me I could take him home to die or chance the operation.”

Little Ashton underwent the complex eight-hour surgery at the end of January. It was the longest day of Shanna’s life.

“I went to the parent accommodation and played Avicii’s Wake Me Up at full blast. The lyrics mean a lot: ‘Wake me up when it’s all over, when I’m older and wiser’.

“But I couldn’t rest and went back to the hospital’s parent’s room a couple of hours earlier than I’d been told.

“I saw the surgeon walk past and he gave me the thumbs-up and a big smile. I said ‘wow, Ashton is back’.

“I didn’t think I would see my little boy alive again.

“I went to see him on life support and he tried to say ‘mum’. The feeling I had was indescribable. It was a feeling like I have never had before I was so happy.”

Shanna is now living for the day her son will receive a new heart. Until then, she is staying with him at the hospital.

They may be hundreds of miles from home but Shanna is truly grateful for HeartWare, the gadget that gave little Ashton a second chance at life.

Heartware is a small pump which attaches directly to the heart.

The HeartWare Ventricular Assist Systemis designed to assist a weakened or poorly functioning left ventricle. It is used as a stop-gap for transplant patients who are at risk of death from heart failure.

It involves general anaesthetic, the opening up of the breast bone, a ventilator to help the patient breathe and a cardiopulmonary bypass a technique which takes over the function of the heart and lungs during surgery.

Once the HeartWare device is successfully implanted, a thin, flexible cable then exits the skin and a small controller and power pack (rechargeable batteries) run the pump.

That in turn helps the heart to keep blood flowing around the body.

Become a donor

If you’d like to donate an organ you can join the NHS Organ Donor Register by completing a form on the NHS website, calling the donor line on 0300 123 23 23 or texting SAVE to 62323.

You can also join when you register at a GP’s surgery or for a driver’s licence, apply for a Boots Advantage Card or register for a European Health Insurance Card.

Let loved ones know of your wish to donate in the event of your death.