FOR more than two years, home for little Grace Westwood has been the Freeman Hospital.
But today she is finally heading home to Cramlington with her family after having a heart transplant.
The toddler, thought to be one of the longest waiters on the urgent transplant list, has been kept alive with a Berlin heart Ventricular Assist Device (VAD) – an air driven pump which takes over the function of a child’s own heart.
Last May (2021), she became the first patient in the UK to have a mobile Berlin Heart driving unit (the Berlin Heart Excor ACTIVE™ï¸) fitted meaning she could go to the park for the first time.
But it would still be months before dad Darren got the call the entire family had been hoping and praying for – a heart had become available for his little girl.
“One of the transplant co-ordinators said there was a match and I think for the first ten minutes it just didn’t sink in as Grace had been waiting for such a long time,” he said.
“We’ve always tried to stay really positive as a family and taken each day as it comes but when that day finally came it just felt surreal.”
Darren immediately called Grace’s mum, Becci, who was equally stunned at first.
“When Daz rang it just didn’t seem real – I think I was in shock as we’d been waiting so long for the news – it was an extraordinary day and I cried a lot,” she said.
Grace’s complex transplant operation at the Freeman Hospital lasted 12 hours – which seemed like forever for her parents.
“It’s hard giving your little girl away to the surgeons, you just have to hope for the best, I remember us walking away and just starting crying,” said Darren.
“It would be 12 hours until we could see her again but fortunately everything went well.”
It has been a remarkable but difficult journey for Darren and Becci, who moved to the North East from Birmingham during the pandemic when Grace was transferred to Newcastle. Now, Grace is finally getting to go home with her big brother, Josh, and one of the first things they do will be a trip to the beach!
However always in the family’s mind is someone, somewhere, has gone through their own personal tragedy and made the decision for their child to become a donor.
“It’s really hard to put into words the gift that family has given us – they’ve lost a child but given us so much. They’ve given us Grace’s life and I really hope they get a little bit of comfort knowing what they’ve done for us – thank you just isn’t enough,” said Becci.
Darren added: “Grace is like a different child and just to hold her with nothing attached, is just amazing. Just to see her walking without being tethered to a machine is amazing….”
As the family prepare to go home, they’re mindful that some of Grace’s friends are still on ward 23 facing that same wait.
“We know other families are in the same position we were – the only advice we can give is to try and stay positive as there are some incredible people out there. Anything we can do to raise awareness of organ donation is so important, said Darren.
For Becci, there’s also mixed emotions about leaving her ‘second family’
“The staff and the hospital have been amazing – we’re so happy to be going home but slightly nervous too. I’ve lived here for over two years and have been coming onto this ward every day for over two years – it’s really emotional to be leaving.
“We are so thankful to all the staff at the Freeman who have gone above and beyond for us.”
Consultant paediatric cardiologist Dr Abbas Khushnood said: “It’s very unique and rare where patients have to be on mechanical support device to keep the heart pumping for such a long period of time. Grace has been very lucky.”
“To see someone like Grace, who has had such a long journey, eventually getting a heart transplant just gives us more hope for younger children with heart failure to be able to get a transplant.”
