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In case you missed it, the big celeb/entertainment news yesterday was that princess Kate Middleton was pregnant and, given her royal lot in life, had gone to the hospital to get treated for morning sickness. The poor dear.

It took awhile for reporters to get the news that it was, in Kate's defense, a bit more than the normal morning sickness. So they, to be fair, began reporting that it was "severe," and then someone let them know she had a condition called HG (Hyperemesis Gravidarum) which they then began reporting as "an extreme form of morning sickness."

But calling HG extreme morning sickness is kind of like calling decapitation a bad sore throat. I know because my daughter had it, and you should know too, in case you or someone you love has the same misfortune.

Follow me over the fold.

photo by the author
"His Mother's Joy At Last"

Nothing you can see by looking at him would give you any indication of how difficult it was to bring this little one into the world, and that is certainly something to be grateful for.  In her two previous pregnancies, his mom (my oldest daughter) had a terrible time with what she thought was just "worse than normal" morning sickness. This time, however, she had a full on case of a disease none of us had even heard of: Hyperemesis Gravidarum (HG). Early in their pregnancy women with HG (and their doctors) start off thinking they just have an unusually bad case of the normal morning sickness. Unfortunately, they and their doctors stay with that diagnosis far past the time when treatment for HG should start. While it begins like bad morning sickness, it's better to think of HG as a separate pregnancy related disorder the main symptom of which just happens to also be nausea (although far more extreme).

The big problem is that there is still little basic research done on HG by the medical and pharmaceutical professions. It is surprising how little is actually known about it. Recent studies suggest that there may be a genetic component (for example, a sister of someone who has had HG is more likely to also have it). And there appears to be at least two varieties of HG as many women get better on their own at about 20 weeks into the pregnancy while others, like my daughter, have it all the way through. It also varies in the severity of its symptoms, ranging from barely tolerable to fatal (historical side note: it's likely the author Charlotte Brontë died from HG).

HG is described by some women as feeling like you have food poisoning that never lets up, but to be clearer still how bad it can get you really just need to understand this: it can lead a joyfully pregnant woman to the inconceivable choice of terminating the pregnancy in just a matter of weeks. In fact, as many as 30% of women with HG will end up choosing to end the pregnancy. First person accounts of how devastating HG is are often times simply heartbreaking:

"[She] has been bedridden in darkness - with no TV, no ability to read, barely able to talk, for the last 7 weeks. A steady and heartbreaking moan can be heard coming from her room. she hangs on, because she knows if she terminates, she will never have the courage/strength to try again."
"There just wasn't any point in trying anymore. No one could comprehend the sheer hell I was going through. I felt so guilty because I actually wanted a miscarriage even though this child was planned and wanted."
When my daughter was finally diagnosed with HG and then finally referred to a doctor who actually knew what it was and how to treat it, she had already been hospitalized several times. She was vomiting more than 20 times a day. Nothing she ate or drank would stay down for more than a few minutes (and usually not even a few seconds). She was out of good veins through which IV fluids could be given to rehydrate her. Once she was seen by the right doctor, she was given a PICC line (sort of a "permanent" IV line run up through a vein so its outlet is positioned close to the heart) and started receiving TPN (nutrition via the PICC line). She eventually was given a variety of anti-nausea drugs normally used for cancer patients during chemotherapy and, towards the end, steroids which help with the nausea but also with the baby's lung development in preparation for an early, induced labor. Her nausea never improved substantially although it became more bearable ("like stomach flu as opposed to food poisoning"). She hung in for as long as she could and was finally induced 3 weeks early.

I've not written the above only to serve as a testament to my daughter's courage and strength or to only describe what she went through (and is still recovering from) but in hopes that someone reading this will remember it should anyone they know seem well beyond the normal morning sickness early in her pregnancy. As much as I would like it to be otherwise, doctors—including OB/GYNs—are in general terribly ill-informed about HG. It seems almost purely a matter of luck that a woman with HG will be correctly diagnosed to begin with, but it is even rarer that she get a doctor who will actually treat it.

To give you an idea of how backwards the medical profession is in regards to HG, most doctors believe (because this is what they were taught in med school) that HG is usually psychological in nature. As a result there are women (and we're talking this century here) who have been committed to psychiatric hospitals because their HG was diagnosed as a psychosomatic response to an unwanted pregnancy rather than the physical disorder that HG is. It is also not at all uncommon for women to be denied proper treatment for HG.  

You want a real life, non-fiction example of "Death Panels?" One woman my daughter spoke with recently was denied the PICC line/TPN treatment by her medical provider and told she could either wait to see if the nausea would get better on its own or terminate her very much wanted pregnancy. There seems to be little regard for the psychological trauma such a choice will inflict on a woman who desperately wants her child but is unable to endure what HG is doing to her. It also disregards the fact that the next time she gets pregnant the symptoms are most likely to be worse.

It is important for a woman with HG to be correctly diagnosed and treated as soon as possible — severe dehydration and malnutrition caused by days and weeks of nausea and vomiting quickly exacerbate things. It is also important that she and her family not expect their family doctor or even her OB/GYN to know much about HG or how to treat it. Sadly, it will fall on both her and her family to "educate the medical professionals" she deals with and she will most likely need well-informed family members standing by her before she finally gets the care she needs. To learn more, please see the Help HER web site.



6:08 PM PT:

My heartfelt thanks  to everyone who has helped put this on the top of both the Recommended and Community Spotlight lists. I know that doesn't happen all that often to diaries here. It is gratifying to know that a lot of people have learned something about HG. I can only hope that will eventually lead to one or more women with HG being diagnosed and treated earlier. Again, thank you all.

Originally posted to Icarus Diving on Tue Dec 04, 2012 at 02:46 PM PST.

Also republished by Pro Choice and Community Spotlight.

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