Indi Gregory died last week, aged just eight-and-a-half months. She had mitochondrial disease, a deadly and fatal genetic condition in which the body does not produce enough energy to survive, as well as several other health complications. In her short life, spent entirely in hospital, she endured two bowel surgeries, brain surgery and three heart attacks.
Her parents, Dean Gregory and Claire Staniforth, insisted on pursuing all treatments available to her; anything that would extend her precious life. The medical staff entrusted with her care believed that treatment should cease, and Indi should be given palliative care in order to make her last moments as comfortable as possible.
Unable to agree, the trustees for the hospital sought a court order that would allow them to not provide life-extending treatment if Indi’s condition deteriorated, and additionally to allow them to withdraw current life-sustaining treatment. The court decided in their favour and Indi died on 13 November.
On the one hand, cases like Indi’s are not uncommon. When parents and medical staff disagree on the appropriate medical treatment for a child, courts are asked to step in and make a decision. Sometimes, this involves giving the child life-saving treatment with which the parents do not agree; sometimes, as occurred in Indi’s case, this involves withdrawing treatment deemed futile.
On the other hand, Indi’s case is remarkable because of some key elements. The first is the seeming cruelty of the case. Reports suggest that Indi’s parents were given just two days’ notice that a hearing would occur, an announcement that left them scrambling. Indi’s dad represented himself at the first hearing and was forced to launch a fundraising campaign to find legal help for the hearings that would follow. The hospital was represented by King’s Counsel.
The second was the extent to which the court was able to override the wishes of the parents. It is one thing to make a declaration that the relevant hospital is not obliged to provide treatment and will not be held liable for withdrawing treatment. It is something else entirely to insist, as the court did, that the baby could not be taken home by her parents, nor transferred to Bambino Gesu, the children’s hospital in Rome. Bambino Gesu offered to treat Indi free of charge and the Italian government offered her citizenship. The court decided that it would not be in Indi’s best interests to be transferred out of Queen’s Medical Centre, the Nottingham hospital where she spent her final days.
The third was that Indi’s case is the third in recent years that have followed a similar pattern: a baby is born with a serious condition in the UK, the parents wish to continue treatment, the hospital objects and seeks a court order, Italy offers to transfer and treat the child for free, the court declines and the child dies. The parents of Charlie Gard, another child with a similar story, reached out to Indi’s parents to offer support and to advocate on their behalf, knowing their struggles all too well.
The fourth was the deep pathos surrounding the denial of experimental treatment to baby Indi. The UK was the first country in the world to legalise mitochondrial donation, a form of assisted reproduction that involves using the gametes of three different parents to avoid the possibility of conceiving a child with the same disease from which Indi suffered.
Mitochondrial donation is itself experimental, with its proponents readily admitting that the immediate and long-term risks for the child, as well as the implications for subsequent generations, are unknown. Experimental procedures were not allowed to try to save Indi’s life; they are allowed, however, to ensure that babies like her are not born in the first place.
The fifth and easily the most important part of this story is how grace was at work throughout. Indi’s dad is not a person of faith and has never been baptised. However, Indi’s parents sought baptism for her before immediately after the first court hearing. Indi’s father told an Italian newspaper that the experience of fighting for Indi’s life in court convinced him of the existence of God.
“I am not religious and I am not baptised,” Indi’s father said. “But when I was in court I felt like I had been dragged to hell. I thought that if hell exists, then heaven must also exist … It was as if the devil was there. I thought that if the devil exists, then God must exist.”
Notably, Indi was baptised on 22 September, well before Bambino Gesu offered to treat her and the Italian government granted her citizenship. Grace was already at work then and continues to work now, with Indi’s father also confirming that he will seek baptism.
Not only can we be confident that Indi is now in heaven; we can also be sure her intercession for her dad is leading him to Christ. It is a reminder to all of us that God can bring goodness even out of the darkest of situations.