When Mighty Z was old enough to “graduate” from the NICU, her care was assigned to a ‘Pediatric Intensivest’, a medical doctor who specializes in caring for adolescents, children, and infants who have serious illnesses or injuries. In short, then, Pediatric Intensivests are (more or less) PICU doctors. Having a Pediatric Intensivest for Mighty Z sounded like a match/match situation to me at the time, as Mighty Z had been trached and put on a ventilator after being diagnosed in the NICU with CCHS, a serious and life-threatening illness. Unfortunately, for us ‘match/match’ it was not. Here's the skinny:
Shortly after taking over Mighty Z’s care when she was about 7-months old, I had a conversation with her Pediatric Intensivest, Dr. X, which I will never forget. It went like this:
Dr. X: "CCHS is like looking for a Zebra in a field full of horses. Why, you ask? Because there are no zebras in a field full of horses."
Me (a tired mom of a baby on life support): "Ummmm...what?"
Dr. X saw that I didn’t ‘get’ what he was saying, so he tried another memorable little analogy:
Dr. X: "We don’t know if she has CCHS, so it's like a ship that got off course and hit an iceberg. We don’t go and ask the captain why we got off course, we just start plugging the hole."
Me (a tired and now very confused mom of a baby on life support): "WHAT??"
Dr. X’s vague analogies had failed him, and it was apparent that we were not yet communicating. So, he finally went the direct route and stated, "You have to understand that CCHS does not exist," to which I replied that, “CCHS does exist, because the hospital and the neonatologist said it did.” And that’s when Dr. X dropped a total doozy, and said: “Here’s the deal, CCHS does not exist, and I really think that you have Munchausen’s By Proxy.” At age 25, (and at that point unaware that Munchausen’s By Proxy Syndrome (MPBS) existed), I didn’t ask him about or understand the implications of his Munchausen’s comment because I was so stunned and still processing that he had just told me that CCHS did not exist. I was very confused. Even though I knew what he had said about CCHS not existing did not ‘jive’ with everything I’d learned about the disease in Mighty Z’s then 7-months of life, part of me really wanted to believe that Mighty Z did not have a disease as horrific as CCHS.
I went home in sort of a ‘haze’. When I got there, I told my husband that I didn’t understand what Dr. X had just told me, and I repeated to my husband what Dr. X said about CCHS not existing and that Dr. X thought I had something called Munchausen’s. At that point, my husband got angry, and he asked me, “Do you know what that means?? It means that Dr. X thinks there is nothing wrong with Mighty Z, and that you made the whole thing up to get attention!” Color me shocked. We hit the Internet together to read up on Munchausen’s by proxy, and the more I learned, the madder I got. I could not believe that Dr. X had just accused me of having my baby trached and vented so that I could get attention when I’d cried buckets of tears and resisted the recommendations to have it done for months.
I drove straight back to the hospital, and I saw Mighty Z’s medical records beside her bed in the PICU. I read them, and I saw in Dr. X’s notes that day he wrote his opinions that Mighty Z had a “respiratory problem” and not CCHS, and that I had Munchausen’s By Proxy Syndrome. And then I went about 50 shades of crazy. I grabbed Mighty Z’s medical records, and I went into the hospital hallway to confront Dr. X, who was doing his rounds with a medical entourage of about 10 people. I threw Mighty Z’s medical records in Dr. X’s face, and I yelled, “WHAT DO YOU MEAN SHE HAS A RESPIRATORY PROBLEM?? DOES SHE HAVE ASTHMA? And, HOW DARE you say that I have Munchausen’s by proxy?? It’s very impressive that I could convince an entire hospital to trach her and put her on a ventilator if there’s nothing wrong with her, when I can’t even get my husband to take out the trash!! If I was THAT persuasive, then whatever way it was that I’d been able to get the hospital to do what I wanted, I should figure that out and apply it at home!" I cannot confirm or deny whether I went on to say mean things about Dr. X’s personal appearance that caused his entire entourage to have to stifle their laughter, but I can confirm that Dr. X eventually said, “I’m not having this conversation with you,” before turning and walking away with his entourage in tow.
Although I wanted to fire Dr. X before leaving the hospital hallway that day, even at 25 I knew that it doesn’t work like that in the real world. Mighty Z was ventilator-dependent 24/7, and she could not totally be without a physician involved in her care until we were able to locate a better doctor. Our choices in the small medical community that we lived in at the time were very slim. So, she (and we) had to suffer through a period of borderline medical neglect (during which time I had to resuscitate Mighty Z often) that Dr. X called "medical care". Finding the right doctor for Mighty Z became a top priority for us, and with the help of Dr. Keens, one of the top doctors in the U.S. for CCHS, my husband and I found a doctor in Las Vegas who specialized in CCHS, (the disease that per Dr. X I had "made up"), and he agreed to take on Mighty Z’s care.
Moving to Las Vegas to give Mighty Z a fighting chance at life was a no-brainer, and it didn't take long after getting a ‘green light’ from the Las Vegas CCHS specialist for us to load up and start waking up in Vegas. When Mighty Z's new doctor read in her medical records Dr. X’s opinion that I had MBPS and had "made up" CCHS in order to have Mighty Z trached and vented, he laughed so hard that he literally fell out of his chair. He couldn’t believe that any doctor would think that CCHS was a made-up disease, but there it was, right there in Dr. X's records.
While I don’t think the story of how I 'made-up' CCHS, a disease that was later determined to have a genetic mutation that Mighty Z tested positive for, is nearly as funny as those medical professionals to whom I've since told it during their involvement in Mighty Z's care, I still tell it from time to time – it’s a pretty compelling story, and it gets lots of attention ;)01 02 12
Ghost writer and Editor Leslie Osborne
Ghost writer and Editor Leslie Osborne