Opinion: Lessons from the short life of Charlie Gard

RARE CONDITION: Charlie Gard who died last week just short of his first birthday.

In his call last week for a public referendum on euthanasia, as represented in Act Party leader David Seymour's End of Life Choice bill, columnist Steve Baron said that surveys had shown majority support for such an end-of-life bill.
Here SUE REID, from Family First NZ, argues against such a bill, citing the story of British baby Charlie Gard who suffered from a rare condition causing progressive brain damage and muscle weakness.
Charlie, who died on Friday, was the subject of a legal dispute between his parents and Great Ormond Street Hospital in London about who should decide a child's fate - parents or doctors.

The short and limited life of Charlie Gard will remain in our hearts and minds for a time to come - though he could not speak, he silently told a powerful story to a world that is moving towards debates on death and life and what our end should look like.

Charlie Gard was born with a genetic defect that puts him in the medical category "incompatible with life" and almost one year on some hard questions have had to be answered and decisions been made.

I can relate to the parents of Charlie - my own child lived just seven days - but, as parents, the most important thing was to always feel like you were contributing to life, comfort and care.

It was always a process for the parents to go through and never a place for the courts to rule. When you have a child with an ailment "not compatible with life" it is a fragile path to walk.

The parents were always going to "get to the place of acceptance" but it was their timing - with Charlie and as a family. Involving the courts was never ideal and cut across the family.

These things are very important for the post-death grief process. Parents must always feel in control - they've done all they can and, yes, only now are they ready to say goodbye. Their grief will be just a little easier knowing they exhausted all the options for their son.

A lot of the talkback fodder on Charlie has been thinly veiled debate for euthanasia and, frankly, some of the comments have left me feeling rather ill.

From "the parents are being selfish" to "he's taking medical care from another child" - clearly said by people who have not had their child in great need or failing to see that, no, no other child has been denied medical treatment because of Charlie.

Wild accusations of Charlie being in pain and distress have not considered how the doctors and medical specialists have been carrying out their duty of care for him.

Pain can be measured in various ways and we must remember his parents would not have come this far if their son was in distress. Doctors are signatories to the World Medical Association and don't let the irony be lost on the fact that this was set up in 1947 after the horrors of World War 2.

The act of euthanasia - the deliberate ending of a patient's life - is unethical and contrary to all the principles of World Medical Association and the New Zealand Medical Association. Their aim is heal often and care always.

The word "dignity" has been hijacked by the pro-euthanasia movement and I challenge their ownership of that word.

Dignity: "... the state or quality of being worthy of honour or respect ... composed or serious in manner ... a sense of pride in oneself or self respect."

Dignity doesn't look just one way - dignity is in the family that gathers or tends to their loved one managing suffering and loss of bodily function.

Dignity doesn't look away but looks their family member in the eye and assures them regardless of recognition or not. Dignity is found in the hospices and palliative care wards and has been present throughout every day of Charlie's short life.

The welfare and the best interests of the child has always been the role of the parents, and the state should support that, not interfere and undermine that because where will it stop?

Charlie's family time has just ended and his parents now face their biggest hurdle, but they can do so with a little more peace because they have been empowered and not hindered by a court ruling that would have cut across their bow.

Some have called them selfish but I see a couple so selfless that they gave their all and everything their son needed in his limited days here on earth.

*Sue Reid is a spokeswoman for Family First NZ on parenting and family issues.