In light of the heart-breaking story of British child Charlie Gard, The Stream‘s John Zmirak decided to interview his old friend Chris Michalski. Chris and his wife Kathryn have been struggling for 11 years with severe medical conditions that afflict their son, Peter. What insights do they have to offer on what the Gard family now faces?

The Stream: We wanted to ask what you think about the Charlie Gard controversy in light of your own son’s story, and your extensive experience dealing with questions of advanced medical care for a child with severe physical challenges. Can you tell us that story, please, beginning with the first diagnosis?

Chris Michalski: Peter was born seemingly healthy and normal. At three months he began showing signs of distress and aversion to eating. He is our fourth child and it seemed within a normal range of behavior. A few weeks later the local pediatrician didn’t like what he was seeing and sent us to the city’s children’s hospital. Bad lab results, several days of back and forth and then admission for what ended up being a year. Kathryn wouldn’t return home and never left Peter’s side.

Like a lot of hospitals, this one was a teaching hospital affiliated with a university. That means that a fairly hands-off attending physician oversees a weekly rotating team of new residents. Things began to immediately unravel. Peter’s abdomen was bloated, he was anemic, and in pain. Endless tests were run looking for the cause of illness with multiple theories presented by the Doctor of the Week trying to explore a new direction. Meanwhile, Peter had lost so much weight that a central line was put in for TPN (I.V. nutrition).

The source of the illness was finally discovered. It was an arteriovenous malformation (AVM) in the liver and it was siphoning blood from the tissue around the intestines. He was vomiting blood, failing fast, and emergency surgery was now necessary. They had to remove an entire lobe of liver. Doctors also found that his bowel had perforated and the gallbladder was necrotic because the AVM had starved it of blood.

After several more surgeries to basically disconnect his intestines, he came back with three ostomies (drains), and remained intubated. He then developed abdominal compartment syndrome, which required another operation that left his abdomen wide open.

A month of additional surgeries left him addicted to narcotics. He had fevers of unknown origin, random bleeding and skin that was now orangey/yellow from TPN stressing his liver. This was all during his first five months. By the twelve month, he had four ostomies, a broken leg from osteopenia, severe liver disease, and was incapable of holding up his own head.

Should We Just Give Up?

The discussion shifted. Should we move Peter to extended care home where he would live away from us? Kathryn, who had not left his side for the entire time, said “No way.” The conversation turned to palliative care and how we should prepare for the inevitable.  

If all this were to happen in Great Britain today, Peter would have faced a medical death sentence. Peter is alive and happy today, eleven years after his diagnosis. Why? Because we were able to pursue other options.

What were your initial reactions to learning of Peter’s condition? How did it affect your marriage, family?  How did you deal with it emotionally and spiritually?

Shock and disbelief. You become mesmerized by the situation’s unrealness. There are tears of course, but not as many as you’d think. From day one, Kathryn lived in a hospital room with Peter and around the clock medical interaction, with zero privacy for a year. The family being separated across multiple states for so long proved hard on everyone. There is a reason why the social service people at hospitals are frequent visitors: These situations can wreck marriages, careers, finances, families.

Faith is essential. Hope is essential. I think living through all this has made each of us in the family more empathetic, tougher, and more grateful. We shall see. When Kathryn and Peter finally came home, she was pretty much suffering from PTSD. Spontaneous eruption in tears doing mundane things, no capacity to engage in the trivial concerns and chit chat of “normal” life. A 1000-yard stare. It took months to come back.

“Zero Chance” for Survival

Did you experience pressure from anyone to abandon your efforts to advance Peter’s health? From whom did that come, and how did it manifest itself?

The hospital we admitted in is a renowned top tier institution. Their philosophy of care is probably just fine for things that have a clear diagnosis. Not so much for situations like Peter’s. Doctors gave him a zero chance for survival and they basically quit. Kathryn’s dad just happen to see a small article in The Wall Street Journal about a study with a non-FDA approved therapy at another top tier children’s hospital several states away. We told them to transfer us and why we wanted to go. They said it was a “long shot” experiment and one of the doctors frankly ridiculed us. We insisted and were on a med-flight the next day.

The team that met Peter at the new hospital is the same one that managed him for years to come. He was in the first fifty or so kids in the study. The “longshot” experiment replaced the soybean lipid in the TPN with a refined fish oil emulsion called Omegaven. Peter turned around within weeks. Two months later he was stable enough to send home. As an aside, for a decade, the doctors who run this study have paid for this medicine out of their own pockets. They are heroes. Even with final FDA review still pending, this medication is now standard use in multiple hospitals, including the original hospital where it all began with us. 

Tell me the biggest challenges you and your family faced.

Coping with the lost time and the endless interaction with insurance companies, medical supplies, and years of travel to the out-of-state hospital every six to eight weeks. It’s like we’re soldiers just waiting to deploy. So why bother hanging art on the walls? How far in advance do we dare plan? Everything feels tenuous.  

What have been the biggest rewards?

Seeing people at their best. The tremendous outpouring of concern. The offers to help the family.  Learning how many people have been praying for Peter. The dedication of professionals at the top of their game. It is humbling and encouraging to know that this vast goodness is just as much a part of life as the hardship.

If Our Son Had Been Born in Britain…

How do you respond to the verdict of the medical and legal authorities in Britain, who are denying the Gard family’s effort to use privately raised funds to attempt an experimental treatment? Does it tell you anything about the difference between the U.S. and the British medical models?

How can one look at this story and not conclude that this is what rationed health care looks like in an expanding welfare state? Somebody tallied the columns on an actuarial table and denied treatment. They designated Little Charlie as “life unfit for life.” Send the family soothing words and a bouquet of lilies.

The welfare state has no option. It must be vigilant about not setting precedents. And let’s be honest: If this was the child of a member of parliament, the royal family, or some other inner circle … Does anyone believe the parents would be denied this option?

Even with the incredible inefficiencies and problems in U.S. healthcare, it took us less than two days to get approval to transfer to another hospital. Telling any family to give up, that they can’t pursue the longshot option … That robs them of hope. It’s evil. There are plenty of stories like Peter’s about people who overcame the odds. They enlighten and inspire.

The Vatican Reaction

I assume you’ve carefully read the statement by the Vatican’s Pontifical Council for Life on the Gard case. If you were addressing the Archbishop who wrote it, what would you tell him?

I’m glad to see Pope Francis seemingly reverse the statement. It is still very troubling.

 

To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.

— Pope Francis (@Pontifex) June 30, 2017

 

The original statement, to be charitable, was inconsistent with the Church’s teachings. Less charitably, it was a betrayal. Yet, when you step back and look at the positions Rome has taken in recent years, about the environment, immigration, and the free market, it isn’t inconsistent at all in my opinion. Straightforward Church teaching turned into complex situational-ethics thought experiments. The Church has become uncomfortable speaking plainly to the State about right and wrong. This wishy-washy positioning and pandering makes the Bride of Christ appear more like some mid-level NGO worried about being taxed, fined, or worse yet, shunned.

The statement should simply have been to remind the world that it is the parents’ decision. If they have the means, let them be. I hope that the Pope made his recent remarks because he too recognizes the error in the original statement.

Those in power, Church and State, are playing a foolish game. They are either oblivious or indifferent to the massive change in attitudes around the world. From every point on the political spectrum, we see a deep distrust of established institutions. This is not just about the Gard family. It is symbolic of an abuse of power. Both Church and State need to take seriously people’s growing resolve to simply not take it anymore. The State can tax to the bitter end. The faithful can withhold Sunday envelopes this weekend. The world desperately needs the voice of a strong Church.

Peter Turns Twelve This Year

What do you think is the proper response of Christians to cases like this?

First, support this family. Send them encouragement, prayers, and funds. Next, write to your bishop or pastor and let him know that churches must support parental rights, and stand up for life.

How is Peter doing now?  

He’ll be twelve in November. He’s extroverted, bright, good humored, and can prove every bit as frustrating as any other kid his age. He’s far from healthy and there are big challenges ahead, but our family is together and Peter’s a big part of it.

Do you have a message for other parents who might receive serious diagnoses? A message for policymakers?

Find an online support group of others going through the same type of diagnosis. Even the best doctors are not thinking and researching with the same intensity as you are about your kid or his illness. Pool these parents together and there is a wealth of support and practical day-to-day advice. Regarding policy, insurance is a nightmare. There are only a handful of states where a catastrophic diagnosis doesn’t bankrupt the individual or trap him in a particular job to keep his coverage. The frustrating thing is knowing that the free market would make this care better and cheaper within a year.