Since the European Court of Human Rights gave their decision three days ago to allow the Great Ormond Street Hospital for Children to end the life of Charlie Gard, many have weighed in on the discussion. Analysis has been provided in the media by various legal journalists including those at The Guardian, BBC, CNN and The Independent.

Now, the Vatican and the Catholic Conference of Bishops in England and Wales have issued statements of their own and jumped into the fray. Now, let me be clear dear reader, I have a dog in this fight. I am an ethnic Catholic who chose to leave the church for two reasons. One was the treatment of abuse survivors by the church leadership, I myself am a survivor of sexual abuse not related to the church.  I also made this decision due to the treatment of my son at the hands of the church’s representatives due to a learning disorder. If you wish to discount what follows as the rantings of a disillusioned former member of this organization, you may certainly do so.

What concerns me most about this case as a parent was what I saw as the capitulation of the Holy See to the governmental machinery of Britain and the European Union in this story. Now for those who may not be familiar with the case at hand let me give you some background. Charlie Gard is a 10-month-old English boy who has been languishing in a hospital in England due to a rare disorder known as Mitochondrial Depletion Syndrome. This is a disorder that robs people affected by it of muscle control and in Charlie’s case means he is unable to even breathe on his own so he is (to be crass) a very expensive child for the National Health Service of Britain and Great Ormond Street Hospital For Children to care for.  Why do I even mention this? Because England has a state run medical system which has the power to decide the fate of their sickest citizens. In late 2012 the English website Daily Mail wrote an article outlining how the National Health Service (NHS) had created a “euthanasia track” for elderly patients, prematurely ending the lives of as many as 130,000 patients in one year.

So, what did the Vatican have to say about all of this? Well, you see they say these types of issues are “complicated”. As a Catholic I was always taught by the church to protect and respect life. “It’s complicated” never entered into it. Abortion? Wrong. Murder? Wrong. Killing people because their medical care is too expensive? Hmmm. You would think that the church as I knew it growing up would say “Wrong”, but this is not the church I grew up with. I grew up in the Catholic church under the guidance of Pope John Paul II. Now, that was a Pope to be proud of. Did I agree with all of his opinions? Certainly not. Don’t get me started on Latin America and the church’s teaching on birth control-I could go for days! But, by and large, I could respect and accept most of his teachings about the church of my birth. Boy has that church changed under Francis!

Now, again, some of Francis’s opinions I agree with. It is certainly no secret to those who read my pieces regularly that I am pretty LGBTQ friendly as a general rule. Chalk it up to my “treat others as you would be treated” upbringing. In this case though I have to say I believe he, and by virtue of his position, the church is woefully in the wrong in the Gard case. Why? Well, lets take it paragraph by paragraph.

“We feel close to him, to his mother, his father, and all those who have cared for him and struggled together with him until now. For them, and for those who are called to decide their future, we raise to the Lord of Life our prayers, knowing that “in the Lord our labor will not be in vain.” (1 Cor. 15:58)”

That is a lovely sentiment, but there is a huge aspect missing here in their ability to understand the perspective of the parents of this child. It is not the church’s literal struggle, it is their philosophical struggle. Members of the church’s religious community have been wrestling with the existential questions of why God allows things like to this to happen since Christ was on earth. This boy’s parents-they struggle literally every day by the bedside of their sick son.

“The Catholic Bishops’ Conference of England and Wales issued a statement today that recognizes above all the complexity of the situation, the heartrending pain of the parents, and the efforts of so many to determine what is best for Charlie. The Bishops’ statement also reaffirms that “we should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration, so that death might be achieved” but that “we do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”

The only people whose efforts count in the end here are those of the parents. It is they who are the most interested parties in saving their son’s life. Yes, we appreciate the work of the doctors and nurses who care for this child as well, they are (to my belief) angels on this earth. But in the end the parents are the only ones vowing to fight to the end for their child’s life in the face of doctors and judges who tell them they shouldn’t and should just let him die.

“The proper question to be raised in this and in any other unfortunately similar case is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family. Likewise, the wishes of parents must heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone. If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.”

This is so wrong on so many levels. These parents are not alone. They have another specialist in the U.S. who  had been willing to give this child a treatment which has had a record of success in 18 children around the world with this disease. Delivery of a drug is suddenly “disproportionate to expected results or excessively burdensome to the patient or family”? Well don’t tell that to Washington state Representative Jayme Herrera Butler, who is the first person to have her baby survive a diagnosis of Potter syndrome. She and her husband were told there was no hope for their daughter either until they refused to give up and found a doctor who was willing to try to help. Their daughter, Abigail, is now three years old and has one of her daddy’s kidneys.

“Dear Charlie, dear parents Chris Gard and Connie Yates, we are praying for you and with you.

✠ Vincenzo Paglia, President”

Once again, I have to say that I find myself on the opposite side of the church of my birth, confirmation and marriage. I respect Charlie Gard’s right to life. I respect his parents unfailing commitment to move heaven and earth to try to save their son. I cannot respect a church leadership that says that it is appropriate to allow a child to die simply because the treatment may be “burdensome”. All I can hope for is that the parents of this child are able to somehow get through this mess and find some peace at the end of this horrific road they are currently on. As for Baby Charlie, I have faith that no matter what happens in his remaining time on this earth that he will one day rest in the peace of the Lord.