One of Scotland’s hardest working mums is begging for help to get her youngest child home from hospital to die surrounded by her family.
Nicola Duncan, 35, is mum to five children - four of whom have serious health issues.
Bryan, 16, was born blind in one eye but with his mum’s support he now attends college and works part-time in McDonald’s.
Lewis, 14, has only one lung because a diaphramic hernia when he was born squashed all his organs including part of his bowel becoming attached to a lung.
Up to he was 10 years old he had serious health problems but while he will need to take medication for the rest of his life, and still attends hospital regularly, the love of his family is helping him to cope.
Rhys, 10, was diagnosed with epilepsy two years ago after a fall on the road and has suffered up to 10 seizures a week.
The only child unaffected by illness is little Isla, 21 months.
But little Willow, six months, is the biggest worry for the family.
Her condition does not even have a name but part of her brain, which controls her breathing, is damaged and both Nicola and Willow’s dad, Peter Heggie, have had to undergo special resuscitation training to help their baby should she stop breathing.
Willow was rushed to intensive care within two days of her birth where doctors battled to save her life.
Her blood had turned to a jelly like state and wasn’t pumping around her body.
Medics gave her just a 50/50 chance of survival.
But three weeks later there was even more bad news for her parents, their precious little girl was blind and was unlikely to ever walk or talk.
A couple of weeks later she was moved to Edinburgh’s sick kids hospital. Peter went with her because only one parent could be there at a time because of the Covid pandemic. And her inspirational mum was needed at home to care for the other children.
The couple were allowed to bring Willow home six weeks ago but after just a few days she stopped breathing.
Peter managed to do CPR to resuscitate her and save her life while Nicola called for an ambulance.
But the little girl has been in Ninewells Hospital, Dundee ever since.
A week after it happened the couple were asked to sign a do not resuscitate order for their little girl.
They were told if they were able to bring her back the same way Peter had done they would do so but if she needed to be kept alive by machines they asked them to consider not doing so.
Peter broke down in tears, after the family agreed it would be in Willow’s best interest, crying: “I have signed my baby’s life away.”
Nicola said: “It was heartbreaking to hear about the DNR. You never think you will have to bury your own baby.
“Every day you are waiting for that dreaded phone call. Everytime the phone goes and it is the hospital I get a knot in my stomach.
“Sometimes I feel like a robot but you just get on and do what you have to do. I need to be strong for the rest of the kids.”
Staff from Rachel House, the children’s hospice in Kinross, have been to see the family to offer advice about caring for Willow at home and they are awaiting news to see when it will be possible to bring her home.
They have also been offering advice about how to tell the other children when the worst eventually happens.
Nicola said: “It is still likely to be a few weeks away before she can come home because she is still in high dependency.
“The hospital say because there is no actual diagnosis she could have two weeks, two months or a year. They don’t know for sure. But we just want her home with us for her last days, however long that will be.
“I just want my baby home and to be able to cuddle and care for her.”
Neither Peter nor Nicola are able to work because of the children’s medical needs and it is costing a small fortune to visit Willow every day.
They also need to find cash to make adjustments to sleeping arrangements and the kitchen before they can safely bring her home.
Willow will be on oxygen 24/7 and that can’t be taken upstairs so she will need to sleep downstairs in a cot and her parents will need to sleep beside her.
The family have launched a GoFundMe page to help raise money to bring her home.
Nicola said: “We don’t like to beg for money but it would mean the world to us to get Willow home with her family.”
To donate go to: https://www.justgiving.com/crowdfunding/philip-lynch-4?utm
