While trying to come to terms with the imminent death of their tiny baby daughter, Ami and Liam Duggleby selflessly thought of others.
The birth of their second child Minnie was set to be a celebration of life but within hours doctors at Leeds General Infirmary delivered the devastating news that would she not make it out of hospital.
Following a routine pregnancy, it soon emerged that the bright-eyed tot – born a healthy 6lb 14oz – had been born with congenital heart problems and with vital muscles missing from her throat. Her tiny, vulnerable frame stood little chance of surviving surgery.
Faced with the prospect of putting their new-born baby through multiple open heart and throat procedures that were likely to kill her, the pair agreed that she pass away comfortably without suffering.
While consumed by grief, parents Ami, 28, and Liam, 26, shocked doctors by asking whether 23-day-old Minnie’s organs could be donated. Earlier this year she became Yorkshire’s first neo natal organ donor - one of only six in UK history - after her kidneys were transplanted to save a young adult.
Speaking out as part of the YEP-backed Be A Hero drive by Leeds Teaching Hospitals NHS Trust to urge people to sign up to the NHS Organ Donor Register, Ami told the YEP: “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.”
Ami and joiner Liam married in spring 2014 and immediately tried for a second child, having had daughter Lilly three years earlier. All was well until Ami’s 32-week midwife visit when it was noted she was bigger than anticipated. She was induced at 37 weeks at Scarborough General Hospital and gave birth to seemingly healthy Minnie.
“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,” Ami said. “I didn’t realise how serious it was.”
Scans revealed a birth defect called a tracheoesophageal fistula, where the pipe between the throat and stomach does not connect, and the tot was taken to LGI overnight for emergency surgery which proved a success.
Ami and Liam, from Driffield, rushed to be with her but doctors then broke the news that a heart murmur detected at birth had turned out to be more serious – part of Minnie’s heart was severely underdeveloped.
She would need three open heart surgeries before her fifth birthday and wouldn’t be expected to live past the age of 30 if she survived. Specialists also found that she had vital muscles missing from her throat that would need operating on.
“It was devastating, she was only 24 hours old and then I’m 28 – to think she would only live to my age,” Ami 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.”
On what was Minnie’s due date, tearful Liam and Ami took doctors’ advice and agreed to let her go and live out her short life peacefully – but surprised doctors by asking whether her organs could be donated.
“We would rather she be with us and comfortable rather than dying on the operating table,” Ami said. “The doctor couldn’t believe we brought donation up. We didn’t realise this was something they had never done.”
All the while “feisty” Minnie was still fighting; her last days spent with family making handprints, being held and comforted. The ventilator was removed and she fought on for two hours before passing and soon after was taken into theatre.
Dad Liam 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.”
After her organs were donated Minnie was brought back to the couple, dressed in an outfit they had requested, as the pair spent hours grieving at her side.
“When we went home I desperately didn’t want to go but I needed to,” Ami said. “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 a fortnight Minnie was laid to rest, her heartbroken parents registered her birth and death at the same time.
On the day of her funeral hundreds witnessed Liam carry Minnie’s coffin in and out of the church and to her final resting place in Driffield.
The Dugglebys have since received letters of thanks from the person who received brave Minnie’s kidneys.
“I could honestly burst with pride for Minnie,” Ami 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.”
MAKE MOST OF CAMPAIGN’S LEEDS EVENT
The Be A Hero organ donation campaign, which is backed by the YEP, is coming to the Trinity Leeds shopping centre today.
Yorkshire families affected by organ donation, including Liam and Ami Duggleby, will attend alongside nurses and clinicians from Leeds Teaching Hospitals NHS Trust which is behind the campaign.
Be A Hero’s superhero mascot will be on hand during the event, which will feature a photobooth where people can take hero photos and post messages of support.
The event will raise awareness of the growing need for more people to sign the NHS Organ Donor Register from 10am to 4pm.
The campaign, launched in partnership with the YEP, was sparked by the news that just 29 families in Leeds donated organs last year while around 800 people in Yorkshire await a lifesaving transplant.
To raise the profile of Be A Hero we are publishing stories about organ donors and recipients from our area, which you can find by searching #BeAHero at yorkshireeveningpost.co.uk.
We’re urging workplaces and communities to support the campaign through anything from putting up a Be A Hero poster to hosting a superhero day.
You can even download a #BeAHero mask from leedsth.nhs.uk/be-a-hero and tweet your superhero selfies to @Leedsnews and @LTHTrust using the hashtag #BeAHero.
Supporters can also send #BeAHero messages of support to facebook.com/yep.newspaper or send their tales of organ donation via email to firstname.lastname@example.org.