A Huthwaite mum has told of her devastation to know that she will likely outlive her adorable “baby daughter”, who battles for life each day.
This is the adorable face of a poorly youngster with a cruel fate.
Tiffany-Rose Waudby was born with so many complications she will never be suitable for a heart transplant.
The one-year-old girl was diagnosed with severe heart defects before birth, and has gone on to prove doctors wrong time and time again. Now, after going in for a critical heart operation her family will soon find out how long she’s got to live.
Her heartbroken mum, Kerry Clinton, 25, has told of the ‘devastating’ position the family are in as the little troopers daily battle for life goes on.
Tiffany-Rose was born with 15 heart defects, and doctors were telling the family even before she was born that there would be complications.
Kerry said: “They told me she wasn’t going to survive, but she did – she’s one in a million. She proved them wrong. They’ve told me she’s going to die so many times, but I know my baby and she’s always fought through it.”
So the mum keeps hope, even today as doctors tell her Tiffany, who turns two in November, has a bleak future.
Tiffany has lung disease and mesocardia, the inversions of all her internal organs into a mirror image, which makes it impossible for her to have a heart transplant.
In January, after months of petitioning surgeons, Kerry found a doctor who would perform open heart surgery and give Tiffany a chance.
She battled nine hours under the knife, with major reconstruction of her heart effectively shaping a missing ventricle.
It was a huge risk to take, but Tiffany made it.
Kerry said: “They kept her alive, thank goodness.”
And in a few weeks Kerry and her partner Arran Waudby are due to visit Great Ormond Street Children’s Hospital in London to find out her prognosis.
Kerry said: “They’re going to tell us how long she’s got to live.
“ It’s heartbreaking – her heart is so deformed she’s got little hope, so she fights for life everyday and we’ll never be able to fix it. Looking at her you wouldn’t know there was anything wrong with her.
“She’s a happy little girl running around playing.
“However, devastatingly there is a 95 per cent chance that we will outlive our baby girl.
“Every day we have with her, every heartbeat, is a bonus.”
Party to thank heart doctors
After a successful fundraiser last year, Kerry hopes for a repeat performance, and is inviting people to a Halloween party at the Unwin Social Club in Sutton on October 30.
Kerry wants to make the fundraiser a success and is asking for anyone who can help out in providing a disco, raffle prizes, stallholders, entertainers and decorations, to create a big Halloween bonanza to raise money for children with congenital heart disease.
Kerry said: “There’s not enough awareness for children’s heart disease. These doctors do these surgeries and special care with kids from all over the world every single day. Let’s give them something back. If you can’t donate, but can help please do.”
Tickets are £2 for parents and 50p for children – under-threes go free
Stallholders charged £7.50 for a stall –anyone who can help is asked to contact Kerry at firstname.lastname@example.org.