Minnie Duggleby becomes 1 of Britain's youngest organ donors at 23 days old

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Minnie Duggleby was born with a congenital heart problem and muscles missing from her throat
Doctors said she faced open heart surgery - and might not survive
Rather than watch their daughter suffer her parents Ami and Liam made the heartbreaking decision to let her pass away peacefully
She died at 23 days old - her parents asked for her organs to be donated
Mrs Duggleby said: 'She's done more in her little life than I have in 28 years. It's just made a really horrific experience more positive'

Published: 03:45 EST, 10 July 2015 | Updated: 07:10 EST, 10 July 2015

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Her life was cut tragically short, but little Minne Duggleby's legacy will live on.

At just 23 days, the beautiful newborn became one of the youngest organ donors in the UK, giving the gift of life just hours after she passed away.

Her selfless parents, Ami and Liam Duggleby, from East Yorkshire, were devastated when doctors told them within 24 hours of their daughter's birth that she was suffering congenital heart problems.

The newborn also had vital muscles missing from her throat, and specialists told the couple she was unlikely to survive multiple open heart surgeries to repair her fragile, under-developed heart.

Rather than let their daughter suffer, the couple made the heartbreaking decision to let her pass away peacefully.

Minnie Duggleby was born with a congenital heart problem and vital muscles from her throat missing. Doctors warned her parents Ami and Liam that their newborn baby girl was unlikely to survive open heart surgery

Rather than let their daughter suffer, Mr and Mrs Duggleby, pictured with Minnie and their three-year-old daughter Lilly, made the brave decision to let her slip away peacefully. Minnie died at just 23 days old, on what was due to be the date she was born

But amidst their grief, the couple surprised doctors by making a second, selfless decision. They asked doctors to arrange for Minnie's organs to be donated, in the hope her short life could help save another

But amidst their grief, Mr and Mrs Duggleby, made a second, selfless decision.

They asked doctors at Leeds General Infirmary if Minnie's organs could be donated, after she died at 23 days old.

The newborn became one of only the six neonatal organ donors in the UK.

Her kidneys were removed and transplanted into an adult donor, who is now recovering from their operation.

Mrs Duggleby said: 'We wanted to make sure Minnie touched someone else’s life besides ours.

'Minnie wasn’t going to have the chance to grow up but we really wanted to feel she had the chance to change lives.

'She's done more in her little life than I have in 28 years.

'It's just made a really horrific experience more positive. We will never forget her.'

Mr and Mrs Duggleby married last spring, and immediately started trying for another child, a sibling for their three-year-old daughter Lilly.

She's done more in her little life than I have in 28 years. It's just made a really horrific experience more positive. We will never forget her

Minnie's mother, Ami

Mrs Duggleby's pregnancy was going smoothly, until a midwife noticed she was bigger than expected at 32 weeks.

She was induced at 37 weeks, at Scarborough General Hospital, and baby Minnie was born weighing 6lb 14oz.

'She was fine when she was born so we were allowed to stay with her and after an hour things started to change and she went a funny colour,' Mrs Duggleby, recalled.

'I didn't realise how serious it was.'

But a scan just after her birth revealed Minnie was suffering a defect called tracheoesophageal fistula, which meant the pipe connecting Minnie's throat to her stomach hadn't connected properly.

Minnie was taken to Leeds General Infirmary overnight for emergency surgery which proved to be a success.

But it was there that doctors then detected Minnie was suffering from a heart murmur, and discovered part of her heart was severely underdeveloped.

Doctors told her parents Minnie would need three open heart surgeries before she was five, and was not expected to live past 30.

At the age of 23 days, Minnie became the sixth youngest organ donor in the UK. Her kidneys were transplanted to save the life of an adult

They also found she was missing vital muscles in her throat that would need operating on.

However, further tests led doctors to conclude that Minnie was unlikely to survive even one operation.

'It was devastating, she was only 24 hours old and then I'm 28 - to think she would only live to my age,' Mrs Duggleby said.

'It was a case of putting her through horrific operations for her to potentially die, and her quality of life would have been terrible. She would still need ventilating.'

Refusing to watch their daughter suffer, and on what was due to be the date Minnie was born, the couple asked that Minnie be taken off her ventilator and allowed to pass away peacefully.

I could honestly burst with pride for Minnie. There's a part of Minnie and a part of me in that person and without it they might never have got a donor

Mrs Duggleby

Her mother said: 'We would rather she be with us and comfortable rather than dying on the operating table.

'We were in one of the family rooms, trying to take it all in and that’s when I decided I wanted to find out if Minnie could be an organ donor.

'I’ve carried an organ donor card since I was 17 and Liam and I are both strong believers in organ donation.

'I had a vague idea it wasn’t something usual for very young babies but it was something we really wanted to do.

'The doctor couldn't believe we brought donation up. We didnt realise this was something they had never done.'

The couple were able to give Minnie her first bath, make hand prints and spend precious time, holding and cuddling her before she passed away.

Minnie died in her mother’s arms and as arrangements were made for the donation, she and Mr Duggleby focused hard on the hope she was giving.

'It was so hard, but it meant so much to know that the specialist nurses were always with Minnie,' she said.

Mrs Duggleby said: 'I wanted to feel like she was going to achieve something. 'She could have just worked at the Co-op or discovered something nobody had done before but she's done more in her little life than I have in 28 years. It's just made a really horrific experience more positive. We will never forget her'

'We knew she was treated gently and with every respect and when she came back she was perfect and we could spend as much time as we needed together with her.

'At the moment Minnie went I did think there is someone out there who’s just had a phone call they have been waiting for and are on their way to a hospital.

GIVING THE GIFT OF LIFE BY BECOMING AN ORGAN DONOR

In the last 10 years, 40 babies younger than two years old have become organ donors in the UK.

Thirty-one of these have been in the last five years.

Only six babies aged under 60 days old have donated organs in the UK.

Professor James Neuberger, NHS Blood and Transplant associate medical director said: 'We are very grateful to Ami and Liam for their brave and selfless decision to donate Minnie’s organs.

'Across the UK there are 7,000 people in need of an organ transplant.

'Last year over 40 per cent of families refused consent for organ donation, even when their loved ones were registered as organ donors.

'Organ donation saves lives, but sadly there is a shortage of donors in the UK and every day three people die in need of a transplant.

'We know many families want good to come out of their own loss and find great comfort in donating their loved ones organs.

'We are very grateful to Ami and Liam for helping more families understand organ donation and the need for more donors.

'They are rightly very proud of their daughter.

'We hope they continue to find some comfort in the gift she and they have shared and that others, young and old, will be inspired to join the Organ Donor Register and talk about organ donation openly with their loved ones.'

'It does help me now to think of that; just to think of how that person might now be able to do really simple things, like enjoying a sunny day.'

Mr Duggleby, 26, said: 'You want to do as much as possible for them.

'I'm used to be able to fix stuff but you can't. I was trying to keep everybody positive but I couldn't do anything.'

Minnie was then taken to surgery, where her organs were removed, before she was taken back to her parents who dressed her in an outfit they had requested.

Mrs Duggleby said: 'When we went home I desperately didn't want to go but I needed to.

'It was probably the most horrendous walk out of hospital in my life as on Clarendon Wing there's people there with their babies and we had to sort funeral plans.'

Within two weeks of her death Minnie's funeral was held, with her parents having to go through the heartbreaking trauma of registering her birth and death at the same time.

The couple have since received a letter of thanks from the person who was gifted with Minnie's kidneys.

'I could honestly burst with pride for Minnie,' Mrs Duggleby added.

'There's a part of Minnie and a part of me in that person and without it they might never have got a donor.'

The couple are speaking out to raise awareness and encourage more people to sign up to the NHS Organ Donor Register.

Dr Simon Flood, one of the clinical leads for organ donation at LTH, said: 'Ami and Liam's remarkable courage, at a time of great sadness and personal loss, has touched the hearts and lives of many people across Yorkshire and we hope it'll enable more families to consider donation.'

To sign the Organ Donation Register visit the NHS Blood and Transplant website here.