First Annual Hyperemesis Gravidarum World Awareness Day, May 15: Do Something

Posted on May 14, 2012 by

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HG T-shirt for HG World Awareness Day

I’ve seen many pregnant women, and all sorts of pregnancies and complications.

I’ve seen women with easy pregnancies. I’ve seen women with hard pregnancies. I’ve seen women with hard pregnancies that the to-be-moms made look easy. And I’ve seen women with pretty easy pregnancies that the ladies made seem hard.

But I’ve never, in all my life, seen a harder pregnancy than my daughter-in-law’s.

Not more dangerous–I’ve seen plenty of more dangerous ones, mind you, including my own daughter’s.

No–she doesn’t win on the grounds of high-risk, particularly, she wins on the grounds of pure misery. It’s a contest I’m sure she would have been happy to have lost.

And since I see I’m on a roll with ‘awareness’ days and weeks, I wanted all to know that May 15 is the First Annual Hyperemesis Gravidarum World Awareness Day.

My bet? More than half (2/3?) of those reading this post have never heard of hyperemesis gravidarum. So here’s what it is, and it isn’t pretty, from MedicineNet:

Extreme, excessive, and persistent vomiting in early pregnancy that may lead to dehydration and malnutrition. It is usually associated with weight loss of more than 5 percent of the woman’s prepregnancy weight. [It] affects about 1 in every 300 pregnant women and is most common in young women, in first pregnancies, and in women carrying multiple fetuses. Hyperemesis gravidarum usually stops on its own by the 20th week of pregnancy. . . Very severe hyperemesis gravidarum may call for the use of intravenous fluids and nutrition.

And the toll it takes is not to be believed. Not just on the woman–her suffering is immense–but on the entire family, as well. For my daughter-in-law’s first pregnancy, she and my son went to the emergency room over 20 times, mostly in the middle of the night. His fatigue was immense.

For her second one [she's a brave soul, I know], she had better care, and had home health care coming to the house for IV fluids and medication, to avoid the nightly excursions to the ER, now with a toddler in tow. That worked for hydration–until her veins collapsed and couldn’t hold the IV anymore. All that time she could not pick up her first-born, Norah, for fear of vein collapse.

Norah needed to be shuffled about [to very doting grandparents, I might add], as my daughter-in-law lay in bed, retching, bringing up nothing but bile, sometimes for over 60 hours at a time.

Friendships fall by the wayside, as the family pulls into itself. My daughter-in-law, a fabulous wife and mother, was lost to her family in both roles as she lay in the darkness, heaving–and it was a loss keenly felt.

And the treatments aren’t always nice, as you might imagine. In desperate scenarios, hyperalimentation is required, where the woman is completely nourished through IV. Usually nutrition is administered this way through a central vein, often the Superior Vena Cava–and it isn’t that pretty.

My daughter-in-law had a PICC line put in the first time, for hydration and medication. We found out later (do you find this so often in medicine? Does it fail to inspire confidence?) that this was not, perhaps, a wise choice. A 2008 article, “Hyperemesis in pregnancy: an evaluation of treatment strategies with maternal and neonatal outcomes” firmly concludes that

Maternal complications associated with PICC line placement are substantial despite no difference in neonatal outcomes, suggesting that the use of PICC lines for treatment of HEG patients should not be routinely used.

I’m glad I didn’t know that then.

But if hyperemesis affects 1 in 300 pregnant women, why isn’t it more well-known?

That ignorance is what the Hyperemsis Education and Research Foundation is working to fight against–always, and particularly with the first annual awareness day.

HG T-shirt for HG World Awareness Day

They’ve pulled out all the stops, from designing t-shirts (Order your HG World Day 2012   T-Shirts Here), to working with the Million Mom’s Challenge (see HER Foundation and Million Mom’s Challenge work together to raise awareness for HG), to writing and circulating a petition

to press lawmakers, researchers and the medical community into action on behalf of HG sufferers and survivors everywhere [SIGN NOW!].

Amanda Tynes, wife of New York Giants’ kicker Lawrence Tynes, suffered from hyperemesis twice (I guess she’s of my daughter-in-law’s ilk), and will be testifying before Congress on the 15th about HG and the toll it takes on families.

Posted about on the “Ayden Rae Foundation: Fighting for a Cause and Cure for HG” site, Tynes discusses losing her first pregnancy, and then says,

Sometimes I want to be mad at God for what happened but I know that he knew I would never have made the decision to end my pregnancy so he took that out of my hands. My heart will always have two pieces missing but I know those pieces are up in heaven. Each day I wake up knowing how blessed I am and love watching my little boys grow up.  HG is a terrible disease and I hope a cure is found so no one else has to lose anyone they love.

The site shares the following statistics:

  • There are nearly 300,000 visits to ERs and hospitals due to HG with an average hospital stay of 2.6 to 4 days. At an estimated $7,000 per admission, with these figures inpatient hospitalization costs total 1 billion 960 million dollars annually in the United States alone.
  • The overall costs of Hyperemesis Gravidarum are much greater, with inpatient/outpatient treatment, emergency department visit, and medication costs exceeding $88,000 per patient if the condition is poorly managed. These are in addition to the personal losses stemming from the disorder, including loss of desire to have more children, difficulty maintaining employment/career, inability to care for existing children, relationship difficulties, inability to have a drug-free pregnancy, which all have untold costs and ramifications to the family unit along with persistent health effects to the mother and child following a long course of medications and treatment (American College of Obstetricians and Gynecologists, 2011).

  • HG Fact – 1 in every 3 HG pregnancies does not result in a live birth.

This can be because the mother is so depleted that her body simply cannot continue to support the pregnancy, or because in some cases she’s so sick an abortion is the best recourse.

This is really what the awareness day is getting at: with appropriate treatment, the experience will still be miserable, but the chances of a healthy birth are greatly increased.

It is a serious illness, with serious consequences, and it deserves a serious response.

You can do anything from having your children run a lemonade stand to raise money for HG awareness, to signing a petition, to talking it up, to blogging about it–to telling your story, if you suffered from its devastation.

Just do something.

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Posted in: Catastrophic Illness