Every Parent’s Nightmare

I have been crying for five days. I have lost sleep for just that long as well. Why have I done this? Over a child I never met. For parents with whom I’ve spoken. Why, you say? Due to a horrible, horrible injustice. I know that there are many people before me who have written about this already, but this has affected me so that I feel as if I have to get this out of me as much as I can, so please, bear with me.

For those of you who haven’t been paying attention to the news, a lovely 23 month old boy, Alfie Evans, lost his battle with an illness that was NEVER officially diagnosed. He passed away in a Liverpool, UK pediatric hospital, Alder Hey, which was identified in the past as being at the center of a scandal involving the harvesting and sale of children’s body parts. This hospital had also gained a reputation of giving substandard care to children and even tracking some into a death spiral. Essentially, they had written certain children off. A pediatric surgeon, Edwin Jesudason, blew the whistle on the hospital, resulting in his being blacklisted by the NHS.

This hospital, Alder Hey, held the child AGAINST the will of the parents, citing that they were acting “in the best interest of the child”. They FORBADE the parents to take the child to another facility, or even home. They determined that the child should be removed from life support, which they did, removing all tubes and ventilation. The denied the child food and drink, expecting him to expire within hours. But the child held on, for FIVE DAYS.  The father even resorted to giving the poor child mouth to mouth. Could you imagine having to do that? They claimed that any independent breathing the child was doing was possibly due to spasms caused by seizures.

Judge Anthony Hayden, repeatedly rejected the parents’ appeals to take their child from the facility and transport him to Italy, who, with the Vatican, granted the child Italian citizenship and who were willing to transport him to Italy for treatment at Bambino Gesú hospital. Not only that, the hospital had police officers guarding the entrances to the hospital, forbidding anyone in and out, while enraged citizens protested on the campus. Attempts to sneak any kind of provisions to the child were thwarted. A Catholic priest who was administering to the child was thrown out of the hospital room because he DARED to admonish the hospital staff. The hospital staff chased off the Italian airport personnel waiting to transport him. They claimed that transporting him would cause him even more suffering. Mind you, all these determinations were done WITHOUT and OFFICIAL DIAGNOSIS. What’s more is that they claimed that they were not willing to work with the parents because of a “bad attitude”. Can you believe that?!

People around the world held prayer vigils, donated money to the family, called on leaders to intercede. I was one of them. Every time I saw that beautiful child, I imagined my own children, particularly my youngest child, who is only one year older than Alfie was, and who, when sleeping, looked just like that beautiful child. It tore my heart out, it destroyed me. This was someone’s child, and could very well have been anyone else’s child.

I think one of the biggest things that absolutely blew me away with all this, was the response from so many British citizens on social media. Mind you, some expressed extreme outrage, but far too many of them had an attitude of indifference or resignation. Many of them claimed that the COURTS and the DOCTORS knew MORE than the parents. They parroted the saying that it was “in the best interest of the child”. They claimed that the child was effectively brain dead and would have no sort of life, but when asked whether there was an official diagnosis which many of us didn’t know about and if the child was written off by the NHS then WHY would they care if Italy decided to take the child in and see what they could do, there were crickets. I was being accused of being an American who didn’t know the full story, yet they never divulged what the “full story” was. When presented with the information of the past organ harvesting scandal, I was accused of being an conspiracy theorist and told that that incident happened in the past and that I had “no evidence” of it currently occurring. The words “science” and “evidence” were thrown around a lot. Oh, but never mind that the child was never officially diagnosed, therefore his condition was not know, therefore, there was no definitive way of knowing the outcome. Even other physicians from other countries indicated that Alfie may have been misdiagnosed. Yet, the people would hear none of that. It was like the hospital, the government-run healthcare system, and many of the people, were DETERMINED to see this child die for whatever reason. My guess is that the judge was proud and obstinate, and the hospital didn’t want to admit that maybe they were WRONG. Both appear to have a MAJOR god-complex.

Towards, the end of sweet Alfie’s life, his parents, who can only be described as having been beaten into submission, issued a statement thanking everyone for their support, declaring they would no longer talk to the press, and that they would work with the hospital to “form a relationship”. Just what kind of nonsense is that? Can you imagine? I was BEYOND miffed FOR these parents.

What makes this whole ordeal even more infuriating is that this is NOT the first time that this has happened, or at least not the first time that something like this has gained national attention. It wasn’t more than two years ago that the very same thing happened to another sweet baby, Charlie Gard.To me, and I’m sure many other Americans, this goes FAR beyond the pale because this is indicative of a common practice. This violates virtually EVERYTHING for which we stand. It violates patient rights, parental rights, human rights, liberty, individualism. Pick the words, it violates them.

Now, the parents of Charlie Gard have announced a campaign to change the laws addressing parental rights and the care of their child. I know I for one will be donating any more I can to help with any legal expenses they may incur in their fight.

If we’ve never been through it, we can never fully know the anguish these parents have suffered, but I, and many like me, can only pray for healing, call for a PROFOUND change, and be vigilant to make sure that something like this doesn’t take hold here in this country.