British children with heart conditions are being "let down" by the lack of cutting-edge clinical trials in the UK, a study has found.
Amelia Dowding was born on February 14th 2017.
It's now a bit of a joke within her family that she arrived on Valentines Day with a broken heart.
It has taken all year to try and fix it and that's meant she still hasn't made it home from hospital.
Her mum, Kelly, told Sky News: "She has had two major open heart surgeries already… it's been hard but we are still smiling because Amelia is still smiling.
"We could sit by her bedside 24/7 be really sad, be really miserable and ignore my other son who is 10 but we decided, both me and Dad decided that wouldn't be any life for anyone."
Amelia's diagnosis was Shone's Complex, which is also known as Shone's Syndrome – where the valves around the heart are too narrow and don't function properly.
While her family have willingly taken part in research that has looked at how parents cope with long hospital stays – they found out it costs them around £1,000 a month – they haven't yet been asked to take part in any big medical trials to improve treatment and diagnosis.
In the right circumstances Amelia's parents would be very keen to participate in studies that would help other families.
"I would do anything to help other people in the same situation and to raise that awareness," Kelly added.
For young cardiac patients in the UK it is a very familiar story.
New research, led by one of the consultants at Birmingham Children's Hospital, has recently laid bare the extent of the problem.
The study, published in the European Journal of Cardio-Thoracic Surgery, analysed all 333 clinical trials looking at surgery for congenital heart conditions published worldwide between January 2000 and August 2016.
Only 10 trials were conducted in the UK and none of these were large, influential trials which are needed to change treatments or guidelines.
Only 431 out of the estimated 65,000 children who underwent heart surgery in the UK in this time frame were enrolled in a clinical trial.
This worked out to be 0.7%.
Mr Nigel Drury, a consultant in paediatric cardiac surgery at Birmingham Children's Hospital where Amelia is being treated, said: "The surgery available for children with heart problems has improved dramatically over the past 20 years.
"However, by not carrying out large-scale, cutting-edge clinical trials to continually improve surgeries, we're letting down the thousands of children born in the UK each year with heart problems."
The research was funded by the British Heart Foundation, their medical director Sir Nilesh Samani said: "For many children with congenital heart disease, the only treatment available is surgery.
"It can be a difficult choice for parents to agree to their child participating in research.
"However, the only way we can improve the range and quality of treatments for these children is through clinical trials.
"This study shows that we can and should do better if we are to improve the treatment and outcomes of children with congenital heart disease."
More from National Health Service
In a statement the Department of Health told Sky News: "We would like to see children who are born with a congenital heart defect benefit from improved treatments and the results of clinical trials.
"Each year we make £1bn available through the National Institute for Health Research into new treatments, and it welcomes funding applications on all health conditions."