A tiny baby girl called Hope who died just 74 minutes after she was born has become Britain’s youngest ever organ donor. Emma Lee and her husband Drew were asked if they wanted to abort one of their twins after scans showed she suffered from an incurable condition. But despite knowing she would die shortly after birth, the couple bravely refused, so she could save other lives.
And last week, just over an hour after she and her brother were born, little Hope died peacefully in her mother’s arms and her distraught parents agreed to donate her kidneys and liver cells.
Now Emma and Drew, who are now back at home with Hope’s week-old twin brother Josh, have spoken of their “pride” at their daughter’s bravery. The couple were inspired by the story of Teddy Houlston - who donated organs last year despite living for just 100 minutes. They had read his incredible and ground-breaking story just weeks before they were given the devastating news that Hope would not survive.
And, after learning their baby had Anencephaly - the same condition Teddy had - and would not survive for more than a few hours, they took comfort from knowing his story meant they could donate Hope’s organs. Emma, 32, said: “Before I was pregnant I read about Teddy in the paper and my only thought was that his parents were so brave. “I never expected that I would end up in exactly the same position. “When we found out Hope wouldn’t survive, knowing Teddy’s story made me confident doctors could do the same thing.
“Today she is still living on inside someone else and it helps with the grief, it’s taken some of the pain away.” Drew, 51, added: “She only lived for 74 minutes but she has achieved more than some people do in a lifetime. “Watching Hope being born was great but heartbreaking at the same time because I knew she would’nt survive. “I will remember those minutes as long as I live.
“She looked very peaceful when she passed away. Her eyes were open at the time so I just closed her lids. "Her eyes were lovely and blue, it was quite a moment. “We feel our little girl is a hero.”
Emma and Drew, who met 10 years ago while working as carers, already had one child Madie, four. Emma conceived twins after undergoing IVF treatment. She said: “Madie was born by IVF and we had to have the same treatment for the twins. "We had been trying for ages - for us it’s been a long journey to create our own family.” But while attending a 12-week ultrasound scan in June this year, their joy instantly turned to grief. Emma said: “We were absolutely over the moon when we found out we were having twins. But during the ultrasound I knew immediately something was wrong. “The midwife went quiet before saying ‘there’s still two heartbeats but there’s a problem’.”
The couple were told that one of their twins suffered from Anencephaly, which affects 6 in 10,000 births and prevents the brain and skull from developing properly. It is so severe that babies usually die before being born or within a few hours or days after birth. Emma and Drew were immediately taken into a side room for bereavement counselling. Emma explained: “The first thing I said was ‘I want to donate the baby’s organs’.
“I hadn’t even discussed it with Drew it was just a spontaneous thing which felt very natural. Straight away he said ‘I want to do it as well’. “We were distraught but we didn’t want her to die in vain.”
Consultants offered the couple the chance to terminate the affected twin and they were told that if they didn’t abort, there would be a greater risk of a premature birth. They decided to carry on despite knowing they were putting their healthy twin at greater risk. Emma said: “We had to weigh up our desire to donate organs against protecting our child. Knowing that he could suffer and be born early made it an even harder decision.” It was around this time that the couple, of Newmarket, Suffolk, discovered the gender of their twins. They had already decided on Josh for the boy, but had to come up with a name for his sister.
Drew said: “We were thinking of names and I thought Hope. “It means hope for us and hope for the other people she helps. “The name has really worked well - we have still got her because she is living on in other people.” Emma and Drew started planning their unborn daughter’s funeral just 20 weeks into the pregnancy.
Last week she was born by Caesarean section weighing just 2lb 13oz, while Josh was delivered two minutes later at over 5lbs.
Tiny Hope was cuddled by her entire family - including grandfather-of-two Drew’s two daughters from a previous relationship. Emma said: “We were with her from the second she was born until the moment she died. “I don’t think anyone spoke during the 74 minutes, we just all gave her cuddles.
“When I held her I was just looking at her features and trying to remember how she looked. “She was tiny, like a little doll, but she looked incredibly peaceful which really helped me. “I will treasure those moments and the time I spent with her for the rest of my life.”
Remembering the scenes at Addenbrooke’s Hospital in Cambridge, Drew added: “I cried my eyes out as soon as she was in my arms. I felt so sorry for her because she was so tiny. “And then everyone in the operating theatre, including the nurses, started crying - I don’t think there was a dry eye in the house.” He added: “When I first held her she had one eye open and one shut. I put my little finger in her hand and she grasped it.”
Just after her death, Hope was taken for the transplant surgery and her kidneys were transplanted into an adult patient and cells from her liver were taken and frozen. These healthy cells will help up to five adult patients survive long enough to undergo liver transplants. The cells are injected into a damaged liver to prolong lives. Emma added: “When we heard the transplant had taken place it instantly took some of the pain away.
“I would like to speak to that person in the future, a part of Hope is living on inside them.” After the surgery, Hope was brought back to the family and Madie, four, then bravely cuddled her tiny sister. Drew added: “I was quite lucky in a funny way because I saw the incision down her stomach, so her kidneys could be removed. It was fantastic - not gory at all - it just looked perfectly smooth like a paper cut. “This image of a CSI autopsy puts a lot of people off becoming donors but it’s not like that at all.”
Emma and Drew have now returned home with Josh, who is feeding - and sleeping - well and they have vowed he will be brought up knowing the story of his heroic twin sister. Hope is due to be cremated next week. Emma has been a full-time carer to Drew following a motorbike accident six years ago. The couple now hope their story will encourage others to become organ donors.
Emma said: “I have always believed that if you are willing to receive an organ you should be willing to give one. Why be cremated or buried with all your organs when there are so many people on transplant lists dying? “I have always felt very strongly about donation and all my family are donors. “Giving life to someone else is an amazing gift - please sign up."