How heart transplant surgery changed 10-year-old Hannah's life

Journalists from The Independent met Dr Nagarajan Muthialu – a renowned heart surgeon at Great Ormond Street Hospital, leading the world in paediatric heart surgery – and spoke to the parents of a child he helped.Halfway through the four-hour operation to give 10-year-old Hannah* a new heart, her surgeon was approaching the most critical stage of the procedure. Dr Nagarajan Muthialu had to suture the aorta of her new heart into her chest with only a tiny margin for error, while at the same time ensuring her lungs were not starved of blood and that tiny air bubbles didn’t travel to her brain.

Dr Muthialu had already removed Hannah’s own enlarged and failing heart and the tubing from an artificial heart machine that had been keeping her alive for the past month. “I had to carefully separate all the structures in her chest, but I couldn’t easily differentiate the heart membrane, the cardiac chamber and the blood tubes,” he says.

Life outside in London carried on as normal, shoppers and tourists packing the streets, unaware that a 12-strong medical team were performing what until two or three decades ago was considered a medical impossibility.

GOSH is home to some of the world’s most experienced paediatric surgeons, making Dr Muthialu’s description of Hannah’s surgery – as “one of the most complex” heart transplant he has carried out – all the more impressive.

Throughout the procedure, up to six hands were inside Hannah’s chest as two surgeons and a trainee registrar removed Hannah’s old heart, disconnected and removed her mechanical Berlin heart and ‘plumbed in’ her new heart. That heart had been removed from an older donor only hours earlier and rushed – on ice in little more than a strong-looking black cool box – to the centre of London and the waiting surgical team.

From the inevitable tale of tragedy behind the donor heart to the state-of-the-art heart and lung machine that pumped blood for Hannah during the surgery, there is nothing routine about heart transplantation. Thankfully, though, Hannah is recovering well and despite some complications, which saw her chest remain open with a plastic, heart-shaped cover for two days after surgery, she went home earlier this week.

Hannah first fell ill two years ago, when her parents, Carole and John, noticed she was struggling for breath. A string of visits to her local hospital in west London followed before she was admitted to GOSH.

“She loved kickboxing and swimming,” said her father John, speaking only hours before she went under the knife. “And then all of a sudden she couldn’t do those things and was asking to be pushed around in her younger sister’s buggy. It was tough, but we never thought she would need a transplant, she always bounced back after she came to GOSH.”

Hannah was diagnosed with dilated cardiomyopathy and as drugs to support her heart became less effective, doctors soon decided that a new heart would be her only chance of a future.

But only weeks before her surgery her mother Carole glimpsed an alternative future when another little girl on the same ward as Hannah suffered a stroke while waiting for a transplant. She didn’t recover and died, reminding all the other families on the ward that around 30 per cent of children waiting for a new heart don’t make it to a transplant.

“It made me appreciate what a miracle it was that everything was happening for our child,” says Carole. “I heard the other child’s parent crying and it made me thank God that our child has been saved and given this chance.”

The process for Hannah and her family doesn’t end at transplant. Life expectancy after a heart transplant is around 20 years (few patients have a successful second transplant) and Hannah faces a lifetime of medication, but Dr Muthialu says she should have an “otherwise normal life” and that life expectancy for transplant patients is rapidly increasing.

For many parents, the hardest part of the transplant process, aside from the wait during operation, is the months leading up to surgery while their child waits on a ward, hooked up to an artificial heart. That’s why one of the key objectives of The Independent’s Give to GOSH appeal this Christmas is to raise funds to support a 14-bed specialist heart unit that will help Dr Muthialu and his team care for children such as Hannah while they wait for transplant.

Hannah is now back at home, where a new swimming costume is waiting for her once she comes off her powerful post-transplant immunosuppressant drugs in three months’ time. “Your life can completely change in a moment,” says her mother. “You can be one person and then your life changes and you become something totally different. If you have faith and you believe, there are so many miracles out there.”

*Hannah’s and her family’s names have been changed to protect patient confidentiality

Adapted from a story that was originally published in The Independent on 10 December 2015.

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