A teenager who died trying to fight her doctors’ attempts to withdraw life support can finally be named after a court lifted a gagging order.
Sudiksha Thirumalesh, 19, died last week while locked in a legal battle with an NHS Trust.
The A-level schoolgirl from Birmingham suffered from a rare degenerative disease and was fully conscious and able to communicate, repeatedly telling doctors that she did not want to die.
However, last month a Court of Protection judge said that she lacked the capacity to make decisions about her treatment amid reporting restrictions preventing Sudiksha, her family and the NHS Trust and medics treating her, from being identified.
As a result, Sudiksha was anonymised by the court for over a year as “ST.”
‘Brutally silenced, intimidated’
On Friday, following the lifting of reporting restrictions, her family released a statement saying: “We did not look for this fight, this fight came to us from a ‘system’ that too readily gives up on life. We were brutally silenced, intimidated, and taken to court in the hour of our need.”
Sudiksha’s disease had resulted in a number of related health problems including impaired sight and hearing loss, chronic muscle weakness, bone disease and chronic damage to her kidneys and lungs. However, it did not affect the functioning of her brain.
The teenager had instructed her own lawyers to argue that she should be kept alive and allowed to travel to Canada or North America in the hope of taking part in a medical trial which she believed would give her a chance of survival.
Her doctors said that they would not stop a transfer to North America if she were to be accepted for a clinical trial. However, her family claimed that the reporting restrictions prevented them from going public and fundraising to make the £1.5 million needed to make the journey. Furthermore, breaching a reporting restriction issued by a court is a contempt of court and, while rare, can result in a custodial sentence.
The Christian teenager told one of two psychiatrists instructed by the hospital to assess her, and who both found that she is not suffering from any mental health issues and that she had the mental capacity to make decisions, that: “This is my wish. I want to die trying to live. We have to try everything.”
Following the lifting of reporting restrictions on Friday, Sudiksha’s parents, Mr Thirumalesh Chellamal Hemachandran and Mrs Revathi Malesh Thirumalesh, and her brother Varshan Chellamal Thirumalesh, can now also be named.
In a statement given outside the High Court, they said: “After a year of struggle and heartache we can finally say our beautiful daughter and sister’s name in public without fear: She is Sudiksha. She is not ST.
“Despite our grief and the continuing shock over everything we have been through, today a part of us is at peace.
“Sudiksha was a wonderful daughter and sister who we will cherish forever. We cannot imagine life without her. We seek justice for Sudiksha today, and for others in her situation.
“We are deeply disturbed by how we have been treated by the hospital trust and the courts. We have been gagged, silenced and most importantly, prevented from accessing specialist treatment abroad for Sudiksha. Had she been allowed to seek nucleoside treatment six months ago it may well be that she would still be with us and recovering. Sudiksha said she wanted ‘to die trying to live’. This is what she did. We are so proud of her.”
Mr Justice Peel adjourned the decision on whether to lift the restrictions on naming the hospital, the hospital trust and the clinicians involved until next week.
The NHS Trust had asked the court to approve a palliative care plan for Sudiksha, meaning that she would no longer receive dialysis and would die from kidney failure within a few days. The trust believed that her apparent refusal or inability to accept that her disease will result in her early, if not imminent, death amounted to a “delusion” and therefore she is incapable of making decisions for herself.
‘System that too readily gives up on life’
In August, Mrs Justice Roberts said Sudiksha lacked capacity to instruct her own lawyers and that decisions about her life and death should be taken by the court in her best interests.
The Christian Legal Centre had criticised the Court of Protection’s decision as “effectively condemning her to death”.
In their statement, Sudiksha’s family added: “We did not look for this fight, this fight came to us from a ‘system’ that too readily gives up on life. We were brutally silenced, intimidated, and taken to court in the hour of our need.
“It is shocking that a family in the middle of stress and tragedy had a threat of imprisonment hanging over their heads.
“Sudiksha was called ‘delusional’ for saying she wanted to live. The ruling from Mrs Justice Roberts was cruel, and no patient and family should be treated in this way.
“We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha’s story.
“We want to thank the medical practitioners who did their best for Sudiksha. To those few clinicians who seemed only to care about Sudiksha dying, we forgive you. We are a Christian family who believe in life, love and forgiveness.”
Sudiksha’s case is similar to that of Charlie Gard, the baby whose life support was withdrawn following a bitter and high-profile legal case in 2017.