A mother whose terminally ill baby has spent the majority of her life in hospital has admitted she lives in “constant dread” of being told by doctors her child has died.
Nicola Duncan, 35, from Linlathen, gave birth to Willow at Ninewells Hospital last November.
The mum-of-four and her partner, Peter Heggie, 40, were over the moon after Willow was welcomed into the world right on time following a straightforward birth.
But only two days later it became clear that something was wrong with their new baby girl when she stopped breathing and was rushed into intensive care.
Since then, the tiny tot has spent all but one-and-a-half weeks of her short life in hospital – both in Edinburgh and in the high care dependency unit at Ninewells.
In the months since, while no official diagnosis has been confirmed, Nicola and Peter have been told her condition is terminal.
‘So far there has been no diagnosis’
Nicola, 35, from Linlathen, said: “I live in constant dread, waiting for that call to tell me that Willow has died.
“She has already stopped breathing on so many occasions and it could happen again any time, we just don’t know when. I live with the constant knowledge and fear that I am going to lose her because the one thing we are certain of is that Willow is going to die.
“The doctors can’t even give a name to what’s wrong with her – so far there has been no diagnosis.
“All we know is that there is something wrong with her brain – the part that tells her to breath doesn’t work properly.”
Willow is on constant oxygen in hospital and is also fed through a feeding tube.
She is completely blind and her parents have been told, if she gets through the current stage of her battle, it is unlikely she will ever be able to walk.
‘The only thing we know for sure is that she will die’
Nicola said: “The doctors have regular talks with consultants and neurologists from all over the country and it seems she is the only baby in Scotland who is dealing with everything she is.
“The one thing we do know is that her condition is terminal and that she will die – but we just don’t know when.”
On the only occasion that Willow was allowed home, she stopped breathing completely and her life was only saved by Peter who carried out CPR on her until paramedics arrived.
Then four weeks ago, the hospital called Nicola and Peter in to say their final goodbyes to their daughter – but Willow fought back to survive on that occasion.
Nicola said: “She is such a little fighter. Sadly however, we don’t even know if she knows we are there.
“We get to hold her and cuddle her and bathe her but she isn’t able to respond to us at all.
“Usually by this stage with your baby you know the things they like and don’t like – sadly with Willow we have absolutely no idea.”
‘I am desperate to get her home’
Her parents’ days are spent at the hospital, taking turn about because of Covid regulations, except on a Sunday when they are allowed to visit her together.
Nicola said: “I am desperate to get her home but we don’t know how we are going to manage.
“We live in a three bedroom house and we have four other children. We would somehow have to adapt our house to accommodate everything Willow needs to stay alive.”
As well as spending each alternate day at the hospital, during the rest of the week Nicola and Peter have to care for their four other children, three of whom have conditions their parents have to cope with.
Lewis, 13, only has one lung as the result of a diaphragmatic hernia, a birth defect where there is a hole in the diaphragm, Reece, 10, has epilepsy and Bryan, 16 , is blind in one eye.
They also have toddler Isla, who will be two in July.
‘Home schooling and the pandemic has been so difficult’
Nicola admits coping with all the demands from her family during Covid has been exhausting.
She said: “Because Lewis has only one lung I obviously wrapped him up in cotton wool during the pandemic, I was terrified he caught the virus.
“Home schooling was difficult and we also have a toddler needing attention.
“Some days I wonder how we will cope but we just do – we have to, there is no alternative, we just deal with it.
“It is also so hard and emotionally draining for our other children. They have watched Willow fight to stay alive, fighting for breath – that is horrendous to see and it is beginning to take its toll on them.
“Reece’s teacher got in touch to say that they were concerned he was emotionally distressed.
“The longer this goes on the harder it is going to be when we do lose her – she is an absolutely beautiful and amazing little girl.
“All I want is to have time with Willow at home with us and her brothers and sister, I just don’t see how that can be possible at the moment.”
The family have launched a Crowdfunding page in a bid to try to afford to make adjustments to their home to allow Willow to come home.
Nicola said: “All we want to is raise enough to bring her home.
“We will put some aside in a fund for her funeral when it comes but if there is any money left over we want to donate that to neo-natal at Ninewells as a thank you for every they have done for us.”
To donate to the cause, click here.