Losing Mikey To Diabetic Ketoacidosis + Undiagnosed T1D

Editor’s note: This article was originally written in 2018 for Jesse Was Here. It may have been edited for length and clarity.

My life as I knew it ended at about 6 a.m. on September 26, 2017. My husband Tom and I were only slightly worried about our brilliant, ebullient shooting star of a son, Michael. A 25-year-old graduate student in computer science, he was one of the acknowledged international stars of his generation in theoretical computer science. In his fourth year as a graduate student, Michael had shown no urgency about graduating, telling us he was happy where he was and had funding for another year.

He was spending very little time at his beloved MIT that year anyway. That summer, he’d gone to Microsoft Research in Seattle and was then three weeks into a fall semester at Berkeley Simons Institute for the Theory of Computing for a special program bringing together researchers from around the world.

This particular Monday, we were anxious because we had not spoken to Michael over the weekend. He had not answered his phone. The same thing had happened the previous weekend, but Tom had reached him the following Monday. This time there was no answer on Monday so Tom emailed Michael’s academic advisor that evening.

It was about 6:00 a.m. on Tuesday, September 26 and I heard a noise from my husband in the other bedroom—it sounded like distress. I asked him if he was OK. “No,”  he said, “Mikey’s dead.” After receiving Tom’s email, the advisor had gone to the apartment that Michael was renting, could not get in and called 911. But it was too late to help my son. 

After I somehow managed to pick myself off the bathroom floor where I had collapsed in sobs, my first question was “what happened?” We were almost immediately connected with an investigator. Violence, suicide and drug overdoses are are often the killers of young adults, but Michael was one of the happiest people we had ever seen and refused to indulge in drugs or alcohol. 

We’d have to wait for the pathology report the investigator replied, but based on his past experience, the circumstances strongly suggested type 1 diabetes (T1D). There were signs of gastric fluids around his mouth and a large number of empty soda bottles around the bed. People with diabetes can get very thirsty and crave sugary drinks, the investigator told us. Even that was news to us.

The next day we were on a plane to Berkeley.

Cleaning out Michael’s apartment, we realized the full extent of what the investigator had observed. There were not just a few liter-size soda bottles, there were at least four trash bags full—he had only been living there for three weeks. 

Various colleagues reported that he had a stomach bug, had not been to the office all week and had cancelled two talks. Nobody had talked to him since Thursday. Of course, we learned that nausea and vomiting were classic symptoms of diabetic ketoacidosis (DKA), which looks a lot like a stomach bug. 

It was two months later that we got the final confirmation. The death certificate read, ‘shock due to ketoacidosis, due to diabetes’.

There still are so many questions. Did Michael have any idea that something was wrong? He was so brilliant and so intellectually curious. This is a person who googled everything. This is a kid who was obsessed in elementary school with infectious diseases. He read books about ebola, the 1917 flu, and other mass outbreaks. How could he not notice that he was craving sugary drinks, which he never drank before? What about his weight loss?

We began to ask each other whether maybe he did know something. He had been more impatient with us during the last few calls, more annoyed at some of our questions, more ready to get off the phone. Maybe he sensed something was wrong but he just did not want to deal with it. Or maybe he was more irritable because he did not feel well but did not recognize it.

I became somewhat obsessed with this question of whether he knew or suspected something. Clearly Michael experienced at least two of the classic symptoms of T1D—weight loss and thirst. 

Did he know or suspect what was wrong and simply think it would be too much trouble to maintain his health the way a person with T1D must do? 

Or was he simply unaware that anything was wrong? 

And then there were the what ifs. What if we had been more alarmed when we saw him in April at his grandmother’s funeral? We noticed that he had lost weight and his pants were hanging off him. I asked him how he lost the weight and he said he did not know. That should have been a clue. But he seemed healthy and as energetic as usual.

But what if we had seen him between April and September as we were supposed to do? 

We were planning to visit him in Seattle in August as he concluded his summer at Microsoft Research. Michael’s mentor at Microsoft Research later said he was very thin but not having known Michael before, he thought that was his normal appearance. 

What if we had seen him? Would we have freaked out? Rushed him to the doctor immediately? I knew that unexplained weight loss was a sign of cancer and I assume that’s what I would have feared.

So what does it mean to be a parent who lost her child to a disease I didn’t even know he had? I guess more than anything it means I want to spare other parents from going through this specific disaster—losing a child because he had a serious undiagnosed condition. 

It means that even more than ending the disease, I am focused on increasing awareness and early diagnosis. Even before we got the final report, I began looking for organizations that are trying to increase awareness, which is how I found Beyond Type 1, and I agreed to be the District of Columbia liaison in a campaign to inform pediatricians about T1D and DKA.

Through internet searches and social media I also learned about a new test for the autoimmunity that causes T1D. Dr. Marian Rewers and his team at the Barbara Davis Center at the University of Colorado have developed such a test, called Autoimmunity Screening for Kids (ASK). 

It can diagnose T1D autoimmunity many years before it manifests as the disease. This test might have saved Michael. The researchers are finding that about one percent of kids have the autoimmunity that causes T1D or celiac disease. 

There is no way to “get over” the death of my son. But if my actions could result in one precious life being spared, I would at least feel that something good came out of this devastating loss to Michael’s family, friends and to the world.

For any other parent dealing with the loss of a child, please check out our resources for parents and the supportive Jesse Was Here social community.