Chanel is literally a medical miracle who clinically has amazed medical professionals, made medical history with multiple UK firsts and a Guinness World Record for the Youngest Ever Open Heart Surgery Patient.
...all that being incredible but Chanel is a little girl who has always had and always will have to fight hard for her life.
Diagnosed antenatally with a rare and incurable heart condition known as Hypoplastic Left Heart Syndrome, the syndrome being a scale and Chanel been the most severe case ever seen. HLHS children need 3 open heart surgeries to survive but the risks are high and only 50% of these children make it to the age of 5 and even then it is not a cure and they need a heart transplant before adulthood which comes with all new risks.
As severe as her diagnosis already was her condition got worse at 30 weeks into pregnancy and a termination was offered multiple times. She was diagnosed with an added complication known as an Intact Atrial Septum and was surviving through oxygen through the umbilical cord but once cut would die very quickly after birth.
Now Chanel needed and added open heart surgery immediately at birth (now 4 in total) in a unique scenario Chanel was born in a cardiac theatre in a hospital with no maternity facilities with only 5% survival rate and even surviving not expected to live passed the age of two - Chanel was born in Newcastle Freeman Hospital with the amazing expertise of an incredible team ready to fight for her and Chanel with a will to live.
Chanel had her second open heart surgery at 7 days, her 3rd at 6 month old and her 4th open heart surgery very recently which was a first in the UK for her condition. She has overcome a cardiac arrest, a major stroke, lives with cerebral palsy and has been tube fed since birth and a total of 21 anaesthetics and lot of her life spent on a hospital ward or on an life supprt machine in intensive care. There is no more treatment available now for Chanels heart and when she now deteriorates again will need a heart transplant next.
Despite everything Chanel is almost 4 - the oldest ever survivor in the UK with HLHS and IAS and has an incredible life! She is humbling and inspiring.
Chanel has a facebook page raising awareness of congenital heart defects and organ donation. Aswell as aiming to give hope to many other families. We have even been told she has saved lives as people have continued their pregnancy after learning of and following Chanels story, she teaches everyone around her to always have faith.
Chanel also raises funds for multiple heart charities and has helped film the new British Heart Foundation campaign. She has also just hit over £5000 for CHUF, the Children’s Heart Unit Fund at the Freeman Hospital. Selling bracelets, sponsored walks and although she could not walk until 2 and a half, 3 month after learning she walked in a charity catwalk for CHUF - and so much more!
Chanel loves giving and wants to be a doctor to help poorly babys when she grows up and despite her own problems loves to give. Every Christmas eve since she was born Chanel has raised funds and personally delivered Christmas gifts and hampers to children spending Christmas in hospital. This year for her 4th year running, dressed as repunzel. Her favourite princess.
She goes through more than anyone I have ever seen for her age, at times it is incredibly heart breaking, some more than others, but she goes through something daily and is so brave and never complains. She helps so many families with not just hope and support but also her amazing kindness and outstanding fundraising for her age. She puts her own difficulties and struggles aside to help others.