The Trials of Charlie Gard

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This blog has been updated since it first posted.

Charlie Gard, an 11-month old resident of the U.K., has caught the attention of world leaders including Theresa May, Donald Trump, and Pope Francis. He has a rare and fatal genetic condition which has kept him at Great Ormond Street Hospital most of his life. He needs a ventilator and a feeding tube to stay alive.

A month after Charlie was born, his parents brought him to Great Ormond Street because he was ill. Six months of hospitalization later, hospital leaders asked the Family Division of the High Court in London to remove life support. His parents appealed all the way to the U.K. Supreme Court and the European Court of Human rights without success. His parents also requested the right to take him to America for an experimental treatment that has been used on similar forms of Charlie’s genetic anomaly, again without success.

Most recently, Charlie’s parents have asked the court to allow them to bring him to their home, on life support, so that he could die there instead of in the hospital or in a hospice facility, once again without success.

I feel deeply for Charlie’s parents, Connie Yates and Chris Gard. My wife and I had a son, Dylan, who was born extremely prematurely. Like Charlie, Dylan also needed a feeding tube and ventilator to stay alive. At first, medical staff was hopeful for his life beyond the hospital, but as the ventilator kept Dylan alive it also did increasing damage to his lungs. On Tuesday morning, September 6, 1994, doctors met my wife and I when we arrived at the hospital to tell us that they had run out of options for Dylan and that he would likely pass away within days.

That afternoon, with many of our family members surrounding us, I baptized Dylan and for the first time most of us held him.  Later that afternoon, we were given a choice whether to remove life support. After a final consultation with the neonatal unit’s senior doctor, Leonard Radecki, and with a hospital social worker, Bev and I decided that the most loving and pro-life thing we could do for Dylan was to allow him to die in our arms instead of in a plastic box.

That evening, Dylan and all of his equipment was moved to a private room. Dr. Radecki shut off the ventilator, removed all the tubes and tape from Dylan, and let us mourn in peace. As we held Dylan, we saw his face fully for the first time as he took his final breath.

Our private drama has been repeated in hospitals around the world; Charlie’s parents faced a similar ordeal. He died July 28, 2017. So why has Charlie’s case caught the attention of the world? Allocation of resources. Had Charlie’s parents been part of the 1 percent, they could have afforded paying the hospital themselves, chartering a jet to America, and bringing him and his equipment home. Few people would ever have heard of him. But Charlie’s medical care is paid for through the U.K.’s health care system. If Charlie had been born in the U.S. or another country where health care is paid through private insurance companies, his parents would have gone to court against an insurance company instead.

Charlie’s case has made international headlines because he and his parents, the hospital, the medical insurance system, and the court find themselves at the difficult juncture between a parent’s right to choose what they believe is best for their child and society’s right to choose how best to allocate limited resources for health care of their citizens.

Some medical ethicists, such as Peter Singer, say that unless a being has self-consciousness, that being has no right to life, but as Christians we believe that all humans bear the image of God and therefore have intrinsic value and an intrinsic right to life. Yet, does the value of one life allow limitless expenditure of resources to preserve that life for a few more months or a few more days? Would some of those resources be used more effectively for other patients? How much is an appropriate amount to spend on one patient? What procedures are appropriate and which are inappropriate?

I have no easy answers, but I do have a deep conviction. Generosity of heart and resources needs to balance a concern for allocating scarce resources. If scarcity guides decision-making, then not just terminally ill children but anyone whom society might consider “weak” is at risk of extermination either directly (as the Nazis did) or indirectly (by refusing to provide public or private assistance to people who cannot provide for their own support). Societies that assume scarcity of resources diminish all members of the society, because anyone who doesn’t “pull his own weight” will be considered a drag on the rest and no longer worthy of life. Old age, difficult circumstances, illness, stroke, or accident can cause any one of us suddenly to depend on society’s resources for our sustenance.

Let’s pray for Charlie Gard, his parents, and many other parents facing similarly heartbreaking circumstances. Just as important, let’s be generous people who advocate for generous help of others who face difficult circumstances. Let’s be generous with church funds to spread God’s goodness not just among ourselves but with our community’s as well. Let’s stand against the me-first mentality that seems so pervasive in public conversations today and, instead, advocate for generous use of public resources so that people in our countries facing difficult challenges can receive the help they need. As St. Paul wrote in the context of taking an offering to assist starving Christians in Jerusalem:

2 Cor. 9:6, 9, 10, 11 Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. As it is written:

“They have freely scattered their gifts to the poor;
their righteousness endures forever.”

10 Now he who supplies seed to the sower and bread for food will also supply and increase your store of seed and will enlarge the harvest of your righteousness. 11 You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.

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Thanks for posting this, Mark. Ten months ago, my husband and I had to make the soul-crushing decision to tell the doctors to stop trying to revive our daughter. To this day, I don't know how we had the strength to do that. However, we do take comfort in the fact that just about every medical resource and effort available was used to give our daughter the best chance at life. We always felt that the hospital and its staff valued her life and was committed to helping her thrive. We are also blessed to live in a state that covers the medical expenses of severely premature babies like my daughter. Without that blessing, we would have faced an astronomical hospital bill for her month of life. It breaks my heart that other parents in similar situations aren't blessed with this same level of support and are forced to fight systems that don't value the life of their child in the way they should. 

Community Builder

Angie, thanks for sharing. Yes, we too are so thankful for the health insurance provided for Dylan; otherwise the horror of that time would have been multiplied.  I'm thankful we could focus on Dylan, not on how to pay the bills. Still, it was shattering to make the decision that the most loving thing we could do for our child was to allow him to die. One of the nurses in neo-natal helped us with this by saying, bluntly but accurately, "There are things that are worse than death." I thank God for his sustaining grace through that terrible time and for the support of many loving people. 

I am so touched to hear your story, the Lord carries us during those times! Unfortunately the system you refer too exists here too depending on your financial state! I am facing many health issues and cannot receive all the care I need because of our system of insurance! You were Fortunate to have the care you needed and that makes me thankful!

Community Builder

Ken, yes, we were fortunate, and I thank God for that. I pray that God will sustain you in the challenges you are facing. Mark

Community Builder

Mark, thank you for sharing these very personal reflections about Dylan and the agonizing decisions you and Bev made. I've heard you describe the circumstances before, but reading it now brings a fresh dimension of impact and makes it all so current, even 23 years later.

Thank you, too, for making the connection to Charlie Gard's circumstances, the contrasting approaches to healthcare, and the larger point about what generosity looks like in the context of limited resources. Particularly in light of the political drama still unfolding in the U.S., your prayerful reflections are so helpful in humanizing the challenges, the costs, and the ethics of healthcare.

Life is precious. Thank you for sharing your story of Dylan, Mark, and for your honesty that there are no easy answers in this life. I'm thankful that as Christians we know that God holds all things in his hands - all the complications of health care - and even life and death are in his strong and loving hands.

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