ORIGINAL STORY: Less than a year after Charlie Gard's parents made international news in their fight against the courts in the U.K. and European Union to preserve his life and pursue new treatments, another infant is in the news. This time it is Isaiah Haastrup, an 11-month old who suffered from oxygen deprivation during his birth.
According to reports, Isaiah can't breathe without the assistance of a ventilator and doctors assert he is unresponsive to external stimuli. His parents are in court fighting the doctor's recommendations to withdraw treatment essentially euthanizing Isaiah.
The political arguments are clear. Yes, socialized medicine causes rationing and it is inevitable that costly care for a prognosis such as Isaiah's would be questioned in such a system. The U.K. has already cancelled or delayed 50,000 procedures citing resource constraints with an untold toll on patients health and comfort. The Health Minister described this as "planned and thoughtful". Perhaps chaotic and unconscionable would be better adjectives, but we don't deal with the very real downsides of socialized medicine in the U.S.
The other argument has to do with the state's ability to act "in loco parentis" when in fact the parents are not absent. Reports are clear that the parents disagree with medical assessments that Isaiah is unresponsive and what him to have a tracheostomy so they can take him home to care for him. The U.K. has already denied one family's request to do this and even prohibited them from using their own funds to travel for additional treatments in the Gard case. With this precedent it seems likely the court will step in once again to make the decision to end treatment for the parents.
Political arguments aside, what is most disturbing about this case and the Gard case is the state's ability to kill hope and in the process require parents to go through a public and contentious fight to cling to it. No parent should have to go through the pain of losing a child. But the process to acceptance is different for everyone and the U.K. is turning it into a matter of judicial precedent.
Before starting a career in business I was trained as a Registered Nurse. I worked as a Field Supervisor for an agency that took care of kids like Charlie and Isaiah at home. When I see the Haastrup's and the Gard's I see the faces of every parent I dealt with in that job. I also hear the determination of every single one of them to chase down new treatments and the need to cling to the notion that their child is indeed interacting with the world around them.
I also recall attending funerals for five children under the age of 10. And being privileged to walk the journey with some truly extraordinary parents who made the decision to forego extraordinary measures for their child and end what they eventually perceived as suffering. You know the grace of God when you watch a mother stand at her child's service and sing Alison Krauss' "When You Say Nothing At All" acapella without missing a note.
Having walked the path with her, holding her when tears needed to be shed and clasping hands to pray with her at times, one thing she never lost was belief and hope. Belief that her child knew her and the connection she felt to him was reciprocal. And the hope at one point there was further treatment or a miracle coming. And at the end she believed she had exhausted every option and hoped was releasing him from pain by not inflicting more treatments on him. Without the control to make the medical decisions for her child, I am not sure she would have found peace with the outcome.
It is these two things, belief and hope, so crucial to parents struggling through the severe illness of a child the state is denying them in the U.K. Losing any loved one is a journey. Losing a child is a journey beyond words and allowing parents to work through it is crucial to healing long term. Charlie Gard's parents were denied their journey by the government. And it looks like Isaiah Haaustrap's may be as well.
UPDATE: Given the precedent set in the Charlie Gard case, it is not surprising that Justice MacDonald of the High Court ruled yesterday that further treatment for Isaiah Haastrup is "not in his best interest".
However life sustaining treatment, in this case a ventilator, is not further treatment for Isaiah. It is his current treatment. The judge has ruled it can be withdrawn. Somehow the judge believes it is in Isaiah's "best interest" to suffocate. Let's call it what it is.
According to press reports, his parents had asked the court to order palliative treatment only. Generally this means that no heroic measures would be taken to save Isaiah's life if his heart were to stop or other vital organs failed. Instead, he would be given pain medicine, other symptom relieving therapies and comfort measures through the duration of his life. The judge denied this request in favor of suffocation. Again, let's be clear.
Doctors at Kings College, where Isaiah is currently cared for, have said he has "low levels of consciousness". His parents assert while this may be true he is responsive to some stimuli. No testimony I have read indicated doctor's have said Isaiah is not capable of feeling pain. In fact, suffering is one of the justifications for suffocating him by removing his ventilator. It would be ironic if it weren't so barbaric and heartbreaking.
This is what happens when the government is in charge of healthcare. Eventually to allocate resources they will assume the responsibility of deciding who lives or dies. Eventually they will use euphemisms like "best interest" and "quality of life" to justify murder.
Prayers for Isaiah and his family as they continue down this heartrending and horrific journey.