A Broken System

Brady, Age 6.

There is something surreal about receiving a bill tied to the worst day of your life.

On September 20, my 17 year old son Brady stopped breathing at 9:43 a.m., and I called 911.

The ambulance arrived in less than two minutes. Emergency responders pulled Brady onto the floor and performed CPR in my living room, in front of our family, for 35 minutes. We stood there in stunned silence, watching them work, desperately waiting for any sign of life.

At one point, we heard beeping and thought they had him back. That moment was uniquely horrible; I had misinterpreted the beeps. There was no heartbeat.

At 10:21 a.m., they ended life saving efforts and pronounced him dead. What remains clearest in my memory is the internal wrestling during those 35 minutes:

If they kept going and resuscitated him at this point, what kind of life would he have, after already suffering for so long? What if they brought him back but he was brain dead, would I then be faced with removing my son from life support? What would Brady want in this situation? Was he ready to leave, or would he fight to come back? Did he have any fight left? And why had I never been brave enough to ask my son any of these questions while he could still answer them?

I kept thinking about the tiny ways Brady could communicate. The limited eye movement. The squeeze of a hand. The occasional ability to get a few words out. Sometimes he could turn his head. I was terrified that even if his heart restarted, the outcome could steal what little he still had, and leave him conscious but unable to communicate at all, trapped inside himself in an even worse way. Could he endure yet another loss of that magnitude?

We had seen glimpses of this before. When he was sick, when we tried a new medication, and in other moments, Brady temporarily lost even those limited abilities. He could not answer with his eyes. He could not signal yes or no. He could not tell me if he was thirsty or needed the bathroom or if something hurt. Those stretches were terrifying for Brady. So this was not hypothetical. And I was afraid of sentencing him to a permanent version of it.

At the same time, it all felt somewhat futile. I knew he was gone. I had watched him leave. If he was going to come back, I felt he would have come back before that moment. What I was wrestling with was not possibility; it was letting go. I was the one who had to answer when they asked if it was time to stop. They told me in most cases if we could not get him back in 30 minutes it was over, and we went five minutes past that.

They packed their equipment slowly. The firefighters and emergency medical team left one by one. Just minutes earlier, our living room had been full with uniforms, equipment, voices and urgency. It had felt crowded with effort and motion and the smallest glimmer of hope. My friends stayed with me. Our house was silent.

I sat with a single police officer and held Brady’s head in my lap as we waited for the medical examiner, who had to arrive before I could pick him up and hold him. You cannot move the body until the medical examiner comes; I did not know this. How would I know this? I sat there, stroking his hair, memorizing his perfect face, knowing these were the last moments I would be able to touch him and see him in this lifetime. I have very little memory of everything else about that day, and have felt somewhat thankful that so much of it was involuntarily wiped from my mind.

Weeks later, I received a bill from the ambulance company. I assumed it had crossed in the mail before insurance processed it.

The bill itself was large, but fair. The emergency team was extraordinary; skilled, relentless, deeply kind. Their care was excellent in every possible way. I am grateful for everyone who was here that day.

This is not about them.

It is not about the amount billed.

This is about the insurance system.

The ambulance company charged $2,045.15, and our insurance company, Blue Cross Blue Shield of Michigan, paid $540.12 as its approved amount under our plan. Because the ambulance provider was considered nonparticipating with BCBSM, they were permitted to bill us the remaining balance.

Under our plan, had the ambulance been deemed in network, a choice I did not and could not have in a 911 emergency, we would have owed nothing beyond our already satisfied deductible.

I exhausted all BCBSM appeals. I requested an external review through the Michigan Department of Insurance and Financial Services. The external review determined that BCBSM followed our insurance contract and existing law in limiting payment to its approved amount. The external review decision also notes that current state and federal surprise billing protections do not apply to ground ambulance services. And finally, it acknowledges that Brady unquestionably required emergency services and that the dispute is solely over the amount paid by BCBSM. It concludes that the remaining balance is our responsibility.

In other words: the system worked exactly as designed. And that is the problem. When a system distributes risk to the only party with no control, the design is flawed.

Most people do not realize that the federal No Surprises Act, which is the law passed to protect patients from unexpected out of network bills in emergencies like ours, does not apply to ground ambulances. Air ambulances are covered. Ground ambulances are not.

National analyses show that more than half of ground ambulance rides are billed out of network, meaning our situation is not a rare oversight, but a common structural reality built into a very broken system.

That means when you call 911, you are likely to receive an out-of-network provider. You cannot choose. You cannot comparison shop. You cannot request an alternative. And if the dice do not roll in your favor, you will be balance billed for the difference.

Legally accurate? Yes. Ethically sound? No.

In 2025, we paid more than $30,000 in premiums and deductible costs to secure the insurance contract that best met the needs of a seriously medically complex child. And even so, medically appropriate care was frequently denied. An expensive JAK inhibitor considered a gold standard therapy for a gene Brady carried, denied. An adaptive car seat prescribed for safety due to lack of neck and torso control, denied. Necessary wheelchair repairs caught in months and months of insurance limbo. Specialists and other interventions were often paid out of pocket simply to avoid months of bureaucratic delay. We obtained what he needed anyway. We always did. And yet, after paying that much for coverage designed to protect him, we were still left with a balance due for the 911 ambulance that arrived when my son stopped breathing.

This ambulance bill is not financially catastrophic to us. It is not even one of Brady’s larger medical bills. Life with a medically complex child involves a constant and devastating avalanche of medical expenses. But emergency medicine, specifically, does not occur inside insurance frameworks. Parents cannot interpret policy language while performing CPR. Any system that expects that, explicitly or implicitly, is detached from reality.

During the appeal process, I spoke with real people. They were not necessarily rude, nor were they especially compassionate. They understood my son died. They acknowledged that in an emergency, you cannot request an in network ambulance.

The flaw is not personal. It is structural. My question is simple: who benefits from this regulatory gap?

I will pay the bill. I will also file a formal complaint, because I can, and because this is wrong. And I will begin advocating for legislative reform that closes this gap: extending surprise billing protections to ground ambulance services, aligning emergency transport policy with emergency reality, and removing the burden from families who have no ability to control the provider dispatched to their home. This happened to us, and it is happening to others.

I started this Substack while Brady was alive because I wanted to expose the broken systems that made caring for him harder. But while he was here, my energy went only toward keeping him alive, and I was careful about his privacy. I never wrote a single word. Now, part of honoring him is refusing to accept what is completely unacceptable.

At what point during 35 minutes of CPR on a child with no pulse should a parent be expected to consider insurance network status?

When a system fails precisely at the moment it claims to exist for, when it cannot meet people in their most urgent, human need, it is not merely inefficient. It is unjust. It is fundamentally broken. And broken systems can be fixed.