Sue Reid: Parents of Charlie Gard have lessons for us

11-month old Charlie Gard has died. Photo / AP

Opinion

• Sue Reid is a spokeswoman for parenting and family issues for Family First NZ and a board member.

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 how our end should appear.

Charlie Gard was born with a genetic defect that put him in the medical category "incompatible with life" and almost one year on, some hard questions had to be answered and decisions 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. They were always going to get to the place of acceptance but it would be 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.

If a court had ruled against Charlie's parents then the feelings of anger and disempowerment would have acted as obstacles in the unreasonable pathway of grief.

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

Bold and 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 to 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 II.

The act of euthanasia - the deliberate ending of a patient's life, is unethical and contrary to all the principles of the 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 is, "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. The state should support that, not interfere and undermine it because where would it stop?

Charlie's family time is drawing to a close, his parents face their biggest hurdle but they can face it 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.