A Personal Update

And some thoughts on the importance of medical empowerment through knowledge

With Oliver

Hi Everyone,

My son Oliver, who is 20 years old, had open heart surgery a couple of weeks ago to replace a valve. Oliver has congenital heart disease, and this was a long-planned surgery. Everything went great. I was so happy with his care that I declared I would even do a free advertisement for the medical center. Not one thing went unexplained, and there was not even one missed pill. In fact, I would say that he experienced modern medicine at its finest. No notes, 10/10. Unfortunately, this week, he suffered a serious complication, almost certainly related to medication, and is back in the intensive care unit. It was a very rough few days. He needed two procedures and a lot of blood and is not yet out of the woods. We keep hoping this blood test or that procedure will bring some relief…and I’d forgotten how much I resented hope. There can be a lot of despair when hope is unfulfilled. And so here I am again, wanting to smash that hope fucker with a hammer. 

I’ve got a lot of experience with false hope. For those of you who don't know, Oliver is one of a set of triplets. I delivered my first son, Aidan, at 22 ½ weeks, who died, and then I managed to stay pregnant for 3 ½ more weeks. Oliver and his brother, Victor, were born extremely prematurely at 26 weeks, and I developed sepsis after they were born. As the parent of two medically fragile children, I’ve had a front-row seat in the rollercoaster of the healthcare system for almost 21 years. Oliver, who has congenital heart disease in addition to everything that comes with extreme prematurity, including severe lung disease, has especially endured more than his fair share. Along the way, we have experienced the true magnificence of modern medicine. For example, all of the care that they received as tiny preemies, opening Oliver’s tight pulmonary valve when he weighed just 1200 g (3 lb), and Victor’s congenital hypothyroidism being caught at birth with universal newborn screening. And, of course, Oliver’s most recent open heart surgery. And we’ve also experienced unacceptable issues with the system. For example, when Oliver was two years old and struggling to breathe, I took him to an urgent care, thinking he just needed a nebulizer. He was actually very unstable, and we were sent by ambulance to the pediatric emergency room. An uncaring emergency room doctor did not evaluate him thoroughly and accused me of being an overly worried physician who was too taxed to handle a regular cold. I refused to leave until his own doctor saw him. He was critically ill and spent a week in hospital with influenza pneumonia. I’ve also butted heads with insurance issues many times. For example, both my boys were on oxygen, and yet their oxygen benefits ran out before the end of the year. It’s really hard to find a more devastating example of the horror of the American health insurance system than exhausting your oxygen benefits for the year in May.

It required a lot of medical knowledge and understanding of the system to get both boys to their best health. Too often, it was far harder than it should have been. There were times when being a doctor was the difference between good and terrible care and possibly even a tragic outcome. The idea that I have had to pull rank (not often, but once is too much), call in favors, and push people around to get the care my children deserve is wrong. I also became a fair expert in critical care pediatrics, cardiology, cerebral palsy, oral aversion…and so on. What happened to those who didn’t have the medical knowledge or connections I had? 

In addition, like many of you, I had concerns that seemed unanswerable by medicine, so I went online…and was led astray. Even into the world of compounded medications! My hope that these sites had the answer overwhelmed all of my medical training. Again, that damn hope.

The difficulties we encountered in those first few years led me to start advocating for better access to evidence-based health information. I realized that while my boys faced so many health issues, each situation was helped by my knowledge of medicine and the system. Eventually, my medical knowledge also helped me understand that there are people online who are well-meaning but wrong and that there are also those online who are taking advantage of the gaps in medicine. I became obsessed with the idea that everyone deserved more information to better advocate for themselves, whether it was in the medical office or online. I decided that when my boys were stable, I would try to fix the medical internet. 

How hard could it be?

Yes, back in the day, I was very naive about the Internet! I think Gwyneth Paltrow and her jade eggs cured me of that misconception.

At first, I wrote a book about prematurity and got on this new thing called Twitter to promote it (this was 2010, for reference). Then, I started a blog about prematurity to provide content I couldn’t cover in my book. When my boys were a little older and their health issues were more stable, I decided to turn my attention to gynecology. That led to another blog, writing for numerous publications, three more books, a TED talk, a TV show (Jensplaining), a podcast, and The Vajenda. I sometimes jokingly refer to this work as the Gunter Medical Media Empire. My mission has been the same through all of it: advocacy through accurate information because you can only be an empowered patient with facts. 

Unfortunately, Oliver is not very stable right now. He’s had a couple of procedures and received a lot of blood, and I have been sleeping in 2-hour stretches in the ICU on a very hard recliner. But my discomfort is nothing compared to what Oliver is experiencing.

I always said I would do my best to fix the system when my kids were stable, and I have given it my all for about 15 years. When people ask how I have so much energy to combat misinformation and advocate for better care, I just think about people who might be struggling because they aren't getting the right care or because they have been led astray by bad advice online or tricked by some charlatan. But right now, Oliver is not stable, and all of my energy needs to be in the ICU with him. I am doing exactly what I did all those years ago–calling experts who I know (who have been so generous with their time) and pulling up guidelines. This means I need to take a short break from writing for you, although I am learning a lot about GI bleeds and transfusion medicine, so who knows, maybe this information will be useful for future posts.

I will be pausing subscriptions for the next week or so, which means (if I understand things correctly) that if you have a paid subscription, you will get that extra time added to the end of your billing cycle. You can still sign up for The Vajenda but not join as a paid subscriber until I restart subscriptions. 

I am hoping to be back at it soon. 

Thank you for understanding.

Jen