How Charlie Gard "Will Make a Difference to People's Lives for Years to Come"

Chris Gard, center, the father of critically ill baby Charlie Gard, reads a statement flanked by mother Connie Yates, right, at the end of their case at the High Court in London, Monday, July 24, 2017. The parents of critically ill baby Charlie Gard dropped their legal bid Monday to send him to the United States for an experimental treatment after new medical tests. (AP Photo/Matt Dunham)

Earlier this week, Connie Yates and Chris Gard, the parents of Charlie Gard, announced their heartbreaking decision to stop seeking treatment on his behalf. As Chris Gard said at the time, “We’ve decided it’s no longer in Charlie’s best interest to pursue treatment and we’ll let our son go to be with the angels.” Sadly, the news came yesterday that Charlie has indeed joined the angels.

Listening to Chris Gard read the family’s statement about their decision earlier this week, I was particularly struck by this part:

Despite the way that our beautiful son has been spoken about sometimes, as if he is not worthy of a chance at life, our son is an absolute warrior and we could not be prouder of him and we will miss him terribly.

His body, heart and soul may soon be gone, but his spirit will live on for eternity and he will make a difference to people’s lives for years to come. We will make sure of that.

Chris Gard is right. And I am absolutely certain that Charlie will make a difference.

How can I be so certain? Because of the profound effect another well-known, tragic figure once had on my own beliefs. I wasn’t always conservative and I wasn’t always pro-life. I was raised a Liberal — by loving, compassionate, well-intentioned, Classical Liberals, with occasional bouts of progressivism balanced out by fleeting moments of conservatism — but I was decidedly liberal. Though my family was liberal and held most of the traditional liberal views, we never really discussed abortion. I, without being willing to examine the issue overly closely, simply characterized myself as someone who was pro-choice, even though I would never personally choose to abort my child.  I maintained that it wasn’t my place to make that decision for someone else, and carefully side-stepped any deeper exploration of the issue.  In fact, I’m somewhat ashamed to acknowledge, I felt smugly superior holding this nuanced and “enlightened” view of the matter.

I was 6 weeks pregnant when the September 11th attacks occurred.  I’ve detailed my recollections of that horrible day elsewhere, but one of the salient memories of it is coming home to a message on the answering machine from my doctor’s office — my hormone levels were low, and I was at risk for miscarrying. They had called in a prescription for me.  When I picked it up from the pharmacy, still numb from the day’s events, I read the warnings, which included possible birth defects, and called the doctor’s office back in a panic. I was assured the benefits outweighed the risks, and it was okay to take the medication.

Fortunately, from that point on, my pregnancy progressed quite smoothly.  When it came time for the 20-week ultrasound, my (then) husband and I were excited.  Even though I never really could make out most ultrasound pictures, it was still fun to see our baby as she developed — and yes, we learned at that point we were having a little girl. We also learned there might be a problem:  The tech advised us that the ultrasound revealed choroid plexus cysts in our baby’s brain, and left to get the genetic specialist to come talk to us. Though not definitive, there is thought to be a correlation between the presence of these cysts and a condition called “Trisomy 18”, which is a genetic abnormality in which a third copy of chromosome 18 is present.  We were told that the vast majority of babies with this condition die either before or shortly after birth.  Those who live have severe health problems and a very low life expectancy.  We were told an amniocentesis could verify if, in fact, our baby had this condition.  We were given some time to consider our options.

I was aware that amniocentesis carried with it its own risks — I recalled reading that there was a 1 in 200 chance it could cause a miscarriage.  As my husband and I discussed it, I kept thinking to myself, “So what am I going to do if the test confirms she has this?”  And I knew — in a heartbeat, I knew — there was no way I would ever opt to terminate the pregnancy, regardless of what the tests showed.  So there was really no point in taking the added risk of the amnio.

Thankfully, though my daughter had some other complications due to arriving 6 weeks early, she did not, it turned out, have any genetic defects, and is, today a healthy, happy, 15 year old.  But the experience of being faced with that choice — even theoretically — was a crucial step in my journey towards becoming pro-life.  Yes, it was my baby I was considering, and yes, I’d always thought I’d never choose to terminate a pregnancy. But being forced to think about it in more concrete terms also forced me to think about what it meant for others.  It wasn’t so easy to keep it in the realm of the abstract anymore.

And yet, I remained “pro-choice” (for others.) I wasn’t fully ready to wrestle with the issue; to look it — or, perhaps myself — square in the face and dig down to the heart of the matter. Then the Terri Schiavo case took over the national news. Reflexively, I took the position that, while I sympathized with her parents’ desire to keep their daughter alive, legally the call belonged to her husband (absent concrete evidence of wrongdoing on his part). And if he (and the courts) believed she wouldn’t have wished to continue life-prolonging measures, then they oughtn’t be continued. The topic became one of intense debate on a political message board to which I belonged, and I found myself embroiled in daily debates about it.

Repeatedly, I laid out the defenses of my position, anxious to prove myself right. But…why was I so anxious? The situation didn’t involve me or anyone I knew directly. And nothing I said or did about it would make any difference. I was just an anonymous person on the internet; one of many voices shouting into the void. But I kept at it. As did those with whom I was arguing. I challenged them, and they challenged me — some harshly, some with a gentle and abiding faith. And all the while, I felt an internal tug of war. Something was pushing back, against and past my lawyerly adamance. I lived in a constant state of disquiet during the weeks and months the debate over Terri Schiavo’s fate raged on.

Shortly before the final court decision was rendered, I experienced a sea change — in my heart and in my soul. My “defenses” dissolved and I embraced the notion that all life has value, that “All who are among the living have hope.” I recall that feeling — that knowledge — washing over me and taking hold like few things have done in my life. Part of me wondered why I’d been so resistant to it previously, aside from simply wanting to be “right.” I finally determined it had far more to do with not being “wrong.” Because if I was wrong on that, then I was wrong in my views on abortion, something I’d been adamantly defending for years.  And acknowledging that, coming to terms with that, inevitably meant embracing a deeper form of heartache than I’d been prepared to do. Because if one values all life, then one necessarily mourns its loss — and assumes a certain amount of responsibility for defending and supporting it. There’s an attendant investment in our fellow human beings that comes along with it. It requires more of us than nuanced, legal/academic and safely disinterested arguments. It is hard.

It was hard when they removed Terri Schiavo’s life support, and hard when she passed away. But I was thankful for her and for the lesson her life and the tragic circumstances surrounding her death taught me. She mattered and she made a difference to me — to many — from thousands of miles away and even in her diminished capacity.

Just as the plight of young Justina Pelletier would do some eight years later. Her case drew attention to the dangers of bureaucratic and state overreach and made millions aware of the concept of “medical kidnapping.” Fortunately, Justina survived her ordeal and was released from Boston Children’s Hospital — after 16 months. Her parents weren’t forced to sit by helplessly and watch her die.

Charlie Gard’s parents were. Chris Gard’s statement drives home just how tragic and needless this was:

We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.

Tragically having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy.

Where there is life, there is hope. No guarantee, but hope. And it isn’t for the State — not in the UK, not in the US — to remove that hope. As Caleb Howe put it so beautifully earlier this week:

We are constantly reminded of the loss and pain that come to those who have no access to health care. If we are honest people, we are also constantly reminded of the sorrow and tragedy that follow authoritarian control of our lives. Is there a solution out there that will keep the most Americans the most free, the healthiest, and the least burdened by those blessings? Maybe there is. Maybe the stumbling GOP hasn’t found it. Maybe the overwrought Democrats don’t know of it. But we should know what not to do.

We should not let what happened to Charlie Gard happen here.

No. We shouldn’t. That is the lesson — the gift — given to us by little Charlie in his far too short life.  Somewhere out there, there are people who’ve been touched by Charlie’s story. Who’ve stopped and reconsidered their views on life, on health care, on the powers that we should and shouldn’t afford our governments. Who will be advocates for life and liberty going forward, fueled in some part by the memory of Charlie. That is how he can — and will — make a difference to people’s lives for years to come.