01 Dec 2023 Mark Mostert: Kids with Severe Disabilities Deserve Better

“Infant Indi Gregory… died a few weeks ago. A heartbreaking tragedy. But why she died is grotesque — the perfect storm of medicine and heartless legal arguments culminating in a court-ordered refusal to show mercy and compassion.”

In a commentary syndicated through InsideSources.com, Able Americans Senior Researcher Mark P. Mostert describes how “the United Kingdom’s behemoth medical monstrosity, the National Health Service” and British courts teamed up to deny life-saving care to a baby whose parents desperately fought for whatever time they had left with her.

Read Mark’s entire commentary below.

Infant Indi Gregory was special — a small head full of brown hair, big brown eyes, and rosy cheeks.

Mark P. Mostert

Indi died a few weeks ago. A heartbreaking tragedy.

But why she died is grotesque — the perfect storm of medicine and heartless legal arguments culminating in a court-ordered refusal to show mercy and compassion.

Born on February 24, Indi’s medical disabilities were severe. She was diagnosed with Mitochondrial Disease, a rare genetic anomaly affecting the body’s ability to generate energy. In her short life, Indi suffered repeated respiratory emergencies and several heart attacks. The prognosis was never good: Survivability, a year or two at most. Medical care addresses as many symptoms as possible and provides comprehensive comfort care.

Parents Dean and Claire loved Indigo dearly. They assumed she would live out her short life in the comfort and safety of her pediatric intensive-care unit.

It didn’t happen. The United Kingdom’s behemoth medical monstrosity, the National Health Service, and the courts got involved.

On September 7, the medical team decided that all life-saving treatment for Indi should be withdrawn. No breathing assistance, no oxygen therapy, no nasal tube, no CPR.

Why? The medicos determined that Indi was in pain, her condition incurable. On September 27^, they petitioned a judge to end all medical care. They asserted that their job was to make children better, and they couldn’t make Indi better. And that because of her poor prognosis, even with continued care, further treatment was futile.

Dean and Claire were under no illusions about Indi’s condition. They disagreed with the doctors and hospital. Responding to the legal move, they asserted that Indi was not in pain and, on her better days, responded to them with smiles and babbling. They wanted continued care until she died naturally — just as the hospital had done since she was born.

On October 13, the judge overseeing the case ruled that the hospital could remove all invasive treatment, declaring that it was in Indi’s best interest to die.

On October 23, an appellate court upheld Indi’s death sentence.

Dean and Claire appealed to the European Court of Human Rights but lost. There were some, however, who brought compassion and care to a tiny infant with severe medical disabilities.

The Italians.

On October 30, Rome’s Bambino Gesu Pediatric Hospital offered Indi continued care if Indi got to Rome immediately.

Again, resistance: The British judge stepped in again, stating that transferring Indi to Rome was “not in her best interest.”

The  Italians responded by granting Indi Italian citizenship, hoping to facilitate the move to the Rome hospital. The move was again blocked by British courts, and the removal of all intensive care was postponed to November 3.

Facing the inevitable, Dean and Claire requested that Indi be allowed to die at home. Their request was denied on November 8 because, said the judge, letting her die at home was “too dangerous.”

On November 12, Indi was moved to a hospice, and all medical care was removed.

On November 13, Indi died in Claire’s arms.

A heartbroken and angry Dean issued a searing statement:

“The (National Health Service) 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 tried to get rid of Indi without anybody knowing, but we made sure she would be remembered forever.”

Indi’s case makes clear a stark underlying bias against those with severe disabilities. It begins with the bias that kids with disabilities always have a lesser quality of life. When their prognosis is very poor, as in Indi’s case, it’s not worth treating them, as whatever treatment is used will not make them “better” and treatment is therefore “futile.”

The clear message from death-obsessed bureaucrats: “We will tell you where and when to die, safely and for your own good. We are the experts. End of story.”

When some lives are judged more important than others, the inherent dignity of every human being is rejected — including kids with disabilities.

But this happens more often than we imagine, and it’s not confined to the United Kingdom. It happens in hospitals and courtrooms all across the United States. Desperate parents are fighting the animus toward their kids with disabilities who are often on their own and facing bewildering opposition from health professionals and courts.

We must do better. Begin by remembering Indi Gregory. Don’t let her death be in vain.

Mark P. Mostert is a senior researcher at Able Americans, a National Center for Public Policy Research effort to support people with intellectual, developmental and physical disabilities. He wrote this for InsideSources.com.