The English bishops have asked for changes to the law so that parents can have a greater say in the fate of their dying children.
They spoke after eight-month-old Indi Gregory died in a hospice after her life support was withdrawn against the wishes of her parents.
Dean Gregory and Claire Staniforth tried to get her to Italy, where the Church-run Bambino Gesu Children’s Hospital in Rome had offered to continue her treatment but British judges blocked the transfer.
Bishop Patrick McKinney of Nottingham, and Auxiliary Bishop John Sherrington of Westminster, the lead Bishop for Life Issues, said the case demonstrated an imbalance of power in existing law and demand changes.
“The legal battle between the NHS Trust and her parents shows again the need for greater weight to be given to the parental voice in these complex and sensitive cases,” they said.
“A simple way to begin to remedy this would be to amend the Health and Care Act 2022 by reintroducing Baroness Ilora Finlay’s amendment on ‘Dispute resolution in children’s palliative care,’ formulated after the death of Charlie Gard,” the bishops wrote.
Charlie was diagnosed with encephalomyopathic mitochondrial DNA depletion syndrome, a rare disorder that left him with brain damage and an inability to move his arms or legs, and for which there is no established medical cure.
His parents started a legal fight to bring him to the U.S. for experimental treatment in 2017, saying “time has run out” for the 11-month-old.
Charlie died in a hospice on July 28, 2017, after life support was withdrawn.
Baroness Finlay’s proposed amendment aimed to ensure that such disputes between parents and doctors will be able to engage effective mediation.
The bishops said they will continue to contribute to wider discussions on questions of “when treatment becomes disproportionate to any possible benefit and the duty of the continuation of basic care, including assisted nutrition and hydration, to protect the good of every child”.
Indi Gregory suffered brain damage from mitochondrial disease. Her doctors said her life support should be removed because there was no prospect of a recovery.
Her father said: “Claire and I are angry and heartbroken. The NHS and the courts not only took away her chance to live a longer life, but they also took away Indi’s dignity to pass away in the family home where she belonged.
“They did succeed in taking Indi’s body and dignity, but they can never take her soul. They tried to get rid of Indi without anybody knowing, but we made sure she would be remembered forever. I knew she was special from the day she was born. Claire held her for her final breaths.”
The bishops also expressed their sadness and offered their condolences to her parents.
“We assure them of our prayers and those of all the Catholic Community, including Pope Francis, at this sad time,” they said.
“As a baptised child of God, we believe that she will now share in the joy of heaven after her short life which brought deep joy to her parents who loved and protected her as a precious gift of God,” the bishop said.
Andrea Williams, chief executive of the Christian Legal Centre, which supported Indi’s family’s campaign, said the hearts of the members of the group “are broken for Dean and Claire and their family”.
“At the Christian Legal Centre, we have given our all, working day and night to support Indi’s parents in their weeks, days and hours of need as they sought to protect their daughter and pursue justice,” she said.
“We have also worked to make known how important it is to uphold laws that wholly protect life and the rights of parents in the lives of their children. Doctors cannot be compelled to treat a patient against their conscience, but neither should they be the ones to prevent parents who secure specialist medical treatment for their child elsewhere from accessing that help.”
“Justice is done in the light, and a truly compassionate society protects its most vulnerable,” she added.
In their statement, the Catholic bishops made an effort to not condemn the decision of medical officials.
“We thank all who worked so tirelessly to care for her at the Queen’s Medical Centre, Nottingham and at the hospice where she died,” they said.