A statement from the parents of Charlie Gard on Nuffield Council on Bioethics report into the disagreements in the care of critically ill children

When little Charlie was born our world changed forever. It was the best day of our lives, becoming parents for the first time to a beautiful baby boy. He was all that we had ever wanted and both secretly dreamed of for many, many years.

Then, he sadly became ill with a genetic condition that he inherited from both of us, a genetic fault on the RRM2B gene that neither of us knew we had. And ever since that day, we felt that we have been let down.

We were first let down by the NHS, then the legal system, but we held out hope that the Nuffield Council report (a report that was commissioned due to an amendment that we had pushed for) would address some of our concerns about gaps in the legal system. Our hopes were unfounded.

Today, the Nuffield Council on Bioethics published its report into the causes of disagreements in the care of critically ill children. The report found that a change in the law is not necessary and the current test, the test that ruled our Charlie couldn’t have access to the support he desperately needed, was adequate.

The literature review, which formed the basis of some of the report’s findings, found that the law was complex and did not draw any clear conclusions about the “Significant Harm” test – the basis of Charlie’s Law. To not make any recommendation pertaining to Charlie’s Law in the report, despite a consensus having not been reached, is a betrayal to the parents who have been holding out hope for this report to recommend a desperately needed change in the law.  

We have been calling for the creation of a new legal test, so that in the case that there is an alternative credible medical treatment, the parents would have the option to pursue that treatment if it did not pose risk of significant harm. The “Significant Harm” principle would work in tandem with “Best Interest”. We believe this is fair as it would mean that medical professionals are able to intervene if they felt that there was evidence to say that the alternative treatment could cause more harm.

 As Charlie Gard’s parents, we feel betrayed by this report, and we stand with all the parents who may feel similarly let down by its findings. Whilst we acknowledge that some of the report’s recommendations will surely address some of the challenges we faced, we think it was unnecessary and cruel to slam the door shut on Charlie’s Law.

We fear we have exhausted our options to make Charlie’s Law a reality. We are so sorry to the parents who have supported us, the parliamentarians who have fought for us, and most of all – we are so sorry Charlie.

Connie Yates and Chris Gard