Felix’s disorder has put me in a really weird place.
As you know, I’m a huge advocate for natural, holistic healing. By that I generally mean healing that is done without pharmaceuticals. I believe there is healing power in things like chiropractic care, meditation, food and nutrition, aromatherapy, herbs, essential oils, etc. Pharmaceuticals are problematic because they tend to be narrowly focused on symptoms rather than the underlying causes of an illness. They tend not to take the whole person into account. They inevitably involve side effects. I think they tend to be overused, and we put too much faith in them to the point that we ignore the negative aspects. And the research for pharmaceuticals tends to be profit-driven.
Now don’t get me wrong: I’ve never been flat-out against pharmaceuticals — I believe they have their place. I know they save lives and I’m grateful for that. I’ve always believed in the value of science, hospitals, medicine, etc. I wouldn’t reject a treatment out of hand just because it was developed by scientists in a lab. But I confess they make me uncomfortable, and they raise all kinds of complex ethical and moral questions in my mind. And I tend to believe that where possible, a natural solution should be sought before an unnatural one.
And then along comes Felix.
He was born with a genetic mutation that prevents his body from building up an immune system. There’s no “natural” cure for a genetic mutation. Nature dictates that he should die. According to the laws of nature, he shouldn’t be able to pass down his genetic information to future generations.
But we’re keeping him alive. Felix is being kept alive by science alone.
His body is being nourished by a chemical cocktail developed in a lab, that’s being delivered directly into his stomach. He doesn’t even have to swallow it. Infection is being warded off my antibiotics and antiviral medications, which are pumped into his body intravenously daily. He spent several weeks on oxygen. Most significantly, the missing element of his immune system — an enzyme called ADA — is being manufactured in cows and injected into his body twice weekly.
There is nothing natural about this.
The best long-term solution for Felix’s survival is an experimental treatment called gene therapy. His bone marrow will be harvested, the cells corrected, and then re-transplanted into his body.
He will essentially be a genetically modified organism.
(It probably comes as no surprise I do my best to avoid GMO’s at all costs because I believe they are harmful to the environment and human health.)
Everything I’ve ever known about healthy living doesn’t apply to Felix.
I wasn’t able to breastfeed him, which I understand to the healthiest decision you can make for your child. In fact, he probably got CMV (a virus) from my breast milk which has put his life at risk. Everything I know about maintaining gut health and supporting the immune system is irrelevant to him. He’s been on constant antibiotics and is not allowed to get probiotics, because they could pose a threat to him.
He can’t even spend time in nature, which I believe has immense healing power. The fungi and bacteria in the air could make him sick.
I have no idea how to best raise this child and have had to defer to the doctors for all of it.
It’s honestly a bit of an ethical conundrum for me.
Felix’s treatments will cost hundreds of thousands of dollars over the next few years. Is it really morally acceptable to pour so much into a single baby when that money could save hundreds of other lives? (I understand that malaria is a huge killer but relatively inexpensive to cure, if the resources get into the right hands.)
It even feels weird keeping him alive unnaturally. Obviously, I want my beloved son to live and be healthy more than anything else in the world. If he has a chance at a long and happy life I want to take it. It would be wrong not to take it, right? I don’t want him to suffer and die as a baby.
But at the same time, we must all suffer and die eventually . . . is it so much worse as a baby?
These are the things that trouble me day in and day out. My brain and my heart are in constant tension, though it’s getting better with time (as long as I don’t think about it much.)
This experience is forcing me to be open-minded about science and research and pharmaceutical medicine. I am being forced to rethink many long-held beliefs and explore many deep-seated feelings.
I kind of hate it.
Has anyone else had similar experiences?