A BABY with a serious heart condition is in need of open heart surgery if she is to survive.

Tilly Gemmell was born in Colchester in December 2016.

There was no indication to mum, Sian Fisk, or dad, Connor Gemmell, that she was poorly before the birth.

It was only when she stopped breathing after she was born it was realised something was wrong.

Tilly, of Abbey Field View, Colchester, was taken to Addenbrooke’s Hospital in Cambridgeshire for a check up after doctors in Colchester found a small skin growth.

It was only after further tests they found she had a condition called Tetralogy of Fallot, which is a group of four structural abnormalities within the heart.

Mum Sian, 21, said: “She will be two in December and she is the size of a six-month-old.

“We have been having trouble getting food in her to help her grow.

“With this heart condition it means the heart can spasm at any time and she can turn blue and floppy, but thankfully we haven’t had that yet.”

Surgery is a necessity for babies born with the condition.

Sian said: “I was told straight away she needs open heart surgery to live.

“It was meant to be done when she was six-months-old but as she was too small they wanted to wait until she was a bit bigger.

“Her surgery has been cancelled three times, there have been no spaces in intensive care.”

She is still waiting for the next opportunity to have surgery.

Tilly has also developed kidney problems and she has seizures from dangerously low blood sugar.

Her mum added: “She got a kidney infection at four-months-old, she was checked over as it wasn’t normal.

“The scan revealed her kidneys are too small and she has two tubes that go into her bladder instead of one.

“Nothing can be done until she has her heart surgery, she is constantly in hospital with infections and it has been a real struggle.”

Tilly is visited by a nurse every week for her multiple conditions, and although the prospect of going to hospital makes her sad, she takes it in her stride.

Sian said: “She started having seizures at the end of last year, any other baby would be in a coma with her level of blood sugar, it’s so low.

“After every two hours her body goes into a mode of starvation, so we have to feed her every two hours, day and night.”

Sian did not go back to work after Tilly was born, due to her health conditions and the fact she is waiting for surgery.

Tilly’s dad Connor, 26, of Berechurch Hall Road, has also prioritised his daughter over work as she waits for her vital surgery.

The family is having to go backwards and forwards to Colchester General Hospital, Great Ormond Street Hospital and the Royal Brompton Hospital for various appointments and procedures.

They are raising funds to get Tilly to her hospital appointments and give her the best life possible.

To find out more and support Tilly visit www.gofundme.com/princess-tilly.