Tuesday, November 16, 2010

I'll take crazy mothers for 100, Alex

My post yesterday elicited many responses. A few people mentioned Munchausen Syndrome – or more specifically Munchausen syndrome by proxyThis is a rare but serious mental disorder where the parent – usually a mom – is deliberately MAKING their child sick to garner attention from the doctors. What I referred to yesterday stopped at exaggeration. I am not aware of anyone who has actually hurt their child.

There is nothing funny about Munchausen by proxy, but the term reminded me of a story. 

Really?! How very unusual.

There was a particularly bad period several years ago. Maggie must have had 10 shunt surgeries within three months. Maggie has hydrocephalus, a buildup of fluid on the brain. There is a shunt – or a tube – in her head to take the fluid off the brain and drain it to other parts of the body. Sometimes the shunt gets clogged, or breaks or gets infected. The only repair is surgical. When it is infected, the treatment involves two surgeries, 10 days apart, one to externalize the shunt and one to replace it, once the infection clears. During the 10 days, Maggie is in the intensive care unit with the shunt coming out of her head draining the fluid. Sometimes these things happened in bunches, but this period was horrific. She had repeated broken or clogged shunts, and at least three infections. She would come home for a day or so and then show signs of infection again and back into the hospital, we would go. 

If you think you can imagine the worry and fatigue we were under you are wrong. Triple whatever you are thinking and you are about halfway there. It was bad. You cannot concentrate on anything. You cannot read a book, you cannot finish an article in the newspaper, you sleep in two-hour spurts and you get more than a little rummy. I found things like People magazine to be enthralling. A one-page article about some celebrity was about the limit of my comprehension. 

Maggie was in surgery (again) and I was reading an article in People about a woman in Florida who had Munchausen by Proxy. She had been harming her child using the gastrostomy tube and catheters to put nasty things into her child’s body. I thought to myself, wow! Maggie has both of those things. Then I read that those with Munchausen by Proxy tend to be knowledgeable about medicine, which is how they fool the doctors. I thought, wow, I am very knowledgeable about Maggie’s medical stuff. 

Then I paused. Could they possibly think I was DOING this to her? Never mind that she was not having any problems with her intestines, bladder, or anything else that I could actually access. The distraction provide by People magazine became another source of stress. I was fighting panic on multiple fronts. 

Maggie came out of surgery and went right back into the ICU. The surgery team came up with her. If a patient goes to the ICU, they do not go to the recovery room. The patient “recovers” in the ICU. Her room was full. The team from the OR was there reporting to the ICU team. There must have been 10 doctors and nurses working feverishly. I was standing out of the way. Things calmed down a bit and the handoff to the ICU team was almost complete. Just before the surgery team left, I said to everyone. “I have to say something”

I announced to all these professionals that I had just read this article in People magazine about Munchausen syndrome and if anyone thought I was doing this to Maggie, they were wrong. Everyone stopped and looked at me strangely. One of the anesthesiologists, who I knew by name, came over to me, put his arm around my shoulder, and said, “Uhhh, this would be a tough one to fake.” 
I looked like a complete idiot, but I needed to say that. It was important to me in my exhausted overwrought state that no one was even considering that. They were not, but I am sure they had various other diagnoses for me.

I have not read People magazine since.

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