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The ABCs of Hyperemesis Gravidarum, an unconventional picture book

As part of the first ever HG World Awareness Day (May 15, 2012), I am sharing my experience with Hyperemesis Gravidarum in the only way I know how as a librarian – as an ABC picture book.  Hyperemesis Gravidarum (HG) is a debilitating, life threatening pregnancy illness that can cost a pregnant woman her life.  Although one of the symptoms of HG is nausea and vomiting, this is not morning sickness.  This is a nausea and vomiting so severe that women lose tremendous amounts of weight, their bodies shut down from dehydration, and babies don’t make it.  Over the course of 3 pregnancies I have thrown up more than a 1,000 times, stared death in the face, and lost one precious baby.  This is my tale . . .

Announcement
 

After my first pregnancy, which would now be considered mild HG, the announcement that I was pregnant didn’t come with presents and balloons.  It came with terror and fear.  It came with prayers and pleading.  Every day I lay there wondering if today would be my last day.  Sometimes I begged for it to be.  I have stood at the edge of a cliff and stared death in the face.  My toes hung over the edge.  Death came barrelling towards me like a train on the tracks, its single headlight cascading its circular light on my chest as I stood there paralyzed in fear.  For me, the announcement that I was pregnant could just as easily have been the announcement that I was dying.

Bathroom
 

Without the energy to walk, and because movement made the vomiting so much worse, I spent many a night sleeping on the bathroom floor.  It became both my sanctuary and my prison.

Charlotte Bronte
 

Charlotte Bronte is the author of Jane Eyre, which I love.  It is also believed that she died in her fourth month of her pregnancy from Hyperemesis Gravidarum.  I never thought I would have something in common with an author I love.  I would prefer it be something besides a life threatening pregnancy condition.

Drugs
 

There is a long list of things you should not do during pregnancy and I broke one of the biggies: I took drugs.  Lots of them.  Dr. prescribed, life saving drugs.  I took the drugs that they give cancer patients to help fight nausea when they are undergoing chemo.  I tried a variety of drugs and then a variety of combination of drugs.  At their best, they simply knocked the edge off.  Often they failed entirely.

Esophagus
 

With HG, you will vomit so much the acid will erode your esophagus.  Every drop that comes back up burns all the more greatly as it comes back through your ravaged esophagus.  The doctor will look down your throat and see places where the skin has been burned away.  Your esophagus, like many parts of your body, will never be the same after HG.  Pregnancy only lasts 9 months, but HG damages you forever. 

Failure
 

Your kidneys start to fail.  Your liver starts to fail.  Your baby’s heartbeat starts to fail.  And you know that you are a failure.  Your body has failed you; it can not do the one thing the world says you were designed to do – make a baby.

Grow Up
 

I will never forget the day I stood at the top of the stairs and began to pass out. It was the 3rd time this happened in my second pregnancy.  I looked down at the bottom of the stairs to see my amazing 3 year old child and I feared for her. What would happen to her if I was home alone with her when I died? Would she get out of the house? Would she be safe? Would she be scared? I began to try and teach her to dial 911 at the age of 3.  I wondered who she would grow up to be without a mother. 

Hunger
 

In our lives we will say to ourselves many times, “I am starving.”  But I have truly starved.  I have vomited until there was nothing left to vomit but blood and bile and I have truly known what it means to be hungry.  I have been so hungry that my body began to do the only thing it could to survive – eat itself.

IV Hydration
 

You become so dehydrated your lips crack, your skin cracks, and you thirst in ways you never knew you could thirst.  In my third and final pregnancy, IVs were the only thing that kept me and my baby alive.  My husband set his alarm to get up in the middle of the night to change my IV bags.  I unhooked myself to go to work and then came home, parched and weary in both body and soul, to hook myself back up again.  IVs delivered the sweet nectar I needed to survive. 

Just . . .
 

Just eat crackers.  Just drink ginger ale.  Just wear sea bands.  Just suck on a pregnancy pop.  Just shut up already! Just love and support me.  Just trust me, I am doing everything I can.  HG is a medical condition with serious health ramifications for both the mother and child.  Each patient is different and responds to treatments differently.  If you are lucky, you find a drug combination and hydration routine that works for you and keep it at bay . . . but just barely.

Ketoacidosis
 

Ketoacidosis is a build of Ketones caused when your body chemistry goes wonky because you have HG.  It has big fancy medical definitions that I don’t really understand.  I just know that it means that your body is shutting down.  I know because it was happening to me.  There are a lot of things that I don’t understand in my medical records – “significant anion gap”, numbers, abbreviations.  It was all just medical jargon for a truth that could not be escaped – my body was shutting down.  It could not support both of us so it was choosing to support neither of us. 

Life
 

You are trying to make a life, but it is taking yours.  Not figuratively, literally.  It is a race to the end to see who, if anyone, will make it through your pregnancy.  In the end, if you survive, you will never take life for granted again.  But in the process, you lose your life.  Your friends, your family . . . you will spend your life in a place of such stark aloneness that you could never imagine.

Maybe
 

I have been pregnant 3 times, but I have 2 living children.  HG has taught me that if you endure a hell on Earth, you get to have a baby – maybe.  There are higher incidences of second and third trimester loss in an HG pregnancy.  Once you get past the first trimester they say you are usually safe, but those odds change once you introduce Hyperemesis into the picture.  With my third child, the force of my vomiting was so severe that my placenta began to detach. At 19 weeks I went in to the ER on a Friday night and they told me they were sorry, my baby wasn’t going to make it through the weekend because my placenta was completely detached.  They were wrong, but the fact that she is here is a miracle.

Nobody
 

Nobody understand HG unless they have lived through it.  My husband, my daughter, my friends – they have seen it, but they will never understand it.  Like any other life changing event, only those who have stood in your shoes can truly understand what it is like.

On the Line, Off the Line
 

At one point my doctor asked the home healthcare nurse to remove my IV line.  She came to my home, took one look at me and called him, “she won’t make it if you remove the line.”  Finally, in resignation, the doctor got on the phone with me and with a heavy sigh he said, “this is going to be a long, painful pregnancy.”  He had no idea.  By taking away my iv, he would be taking away my life line. 

Parasite
 

Noun. 1. An organism that lives in or on another organism (its host) and benefits by deriving nutrients at the host’s expense.  It is a struggle every day with HG to remember that there is a baby inside of you trying to live.  Not just any baby, but YOUR baby.  This is the one thing you must keep reminding yourself.  In my 3rd pregnancy, I bought a baby blanket and laid with it every day to help remind me that I was fighting for the life of my baby, not simply feeding a parasite.  Many days it was too easy to forget. I had learned a horrible truth: Even in the 21st century, woman can still die from pregnancy.

Questions
 

Every time I see a pregnant woman walking around the mall, I am flabbergasted: She can walk?  She looks so . . . healthy?  When people tell me they are pregnant I don’t think congratulations.  No, I think, I hope you don’t die.  There are so many questions that come with HG: Why me? Will it be like this every time? Does it happen to everyone?  Am I going to die? Is my baby?  Will it happen again?  And now, as the mother of two little girls, will it happen to them?

Racing
 

With HG, you are racing against time.  It is a 9 month race to a very important finish line – your baby.  But every step you take closer you seem to see the finish line drawing farther away.  It’s an illusion created by the depths of your despair, by the shattering of your undernourished mind, but the finish line seems so very far away . . . and you are sure you will never reach it.

Shower
 

“We waited until you were almost ready to deliver to give you a baby shower.  We weren’t sure you were going to survive the pregnancy.  We thought there was no way the baby would.”  That’s what a co-worker once told me after my first pregnancy.  They had never seen anyone be pregnant like me before. They thought there was no way me or the baby would survive and they put off having a baby shower until the last possible moment.  And yet, that pregnancy was definitely the best out of my 3.

Tachycardia
 

BEATBEATBEATBEATBEATBEATBEAT “Your heart is beating too fast.  It is working too hard to keep you alive”.  At one point I was hospitalized and my resting heart rate was over 200. Yet my blood pressure was down to around 60 over 40.  No one thought I would make it through that night in the hospital.  When that pregnancy ended, without a baby, I spent the next 7 months or so taking medication to help regulate my heartbeat. Beat, beat, beat . . . .  beat

Ultrasound
 

The ultrasound tech quickly reached up and turned off the sound as we heard the faint, slow, uncertain heartbeat of my second child.  Thump, thump . . . . thump.  “That’s doesn’t necessarily mean anything,” she fearfully whispered.  But we both knew it did.  Three weeks later, 3 hospital stays later, we would learn that my body, which was barely keeping me alive, had failed to keep my baby alive.  10 weeks, 4 ER visits, multiple IVs and all we got to bring home from the hospital was an empty uterus and a broken heart.

Vomiting
 

In the midst of my second pregnancy, by far my worst, I vomited sometimes more than 30 or 40 times a day.  I vomited so much there was nothing left to vomit except bile and blood.  There ought to be a law, once you have survived HG you never have to throw up again.  Except I find that now I am more prone to it.  My stomach will never be the same. HG changes you forever – physically, emotionally and spiritually. It rocks you to the core.

Water
 

With parched lips and sagging skin you stare at the glass of water in your hand.  You want more than anything to drink it but you know it will not stay down.  It sits there, taunting you.  Like Alice down the rabbit hole a glass of water sits there with a note saying “drink me”; but, even though you know you must, you can not.  And when you do, oh . . . the cycle starts all over again.

X Marks the Spot
 

There is a before and an after.  There is who you were before HG; before you stared death in the face and learned what it means to lose a child.  The you before who faced the world head on.  And then there is the after. The you that stood at the edge of that cliff.  The you that has seen a darkness so dark you worried there would never be a ray of light again in your world.  The you that knows that women still die in pregnancy and that far too often, no baby comes.  X marks the spot where you change – where HG changes you forever.

Yellow
 

As your liver begins to fail, your skin turns yellow.  Yellow looks good on mustard, but not so much on the face of a pregnant woman.  Jaundice is what it is called.  It doesn’t matter what name they give it, all you will remember is the yellow pallor of your skin and that slow, stark realization that your body is failing.

Zeal
 

Hyperemesis Gravidarum.  The term sits there, heavy but unspoken, in my medical records from my first pregnancy.  They were whispered lightly in my second pregnancy; a pamphlet sent in the mail from the hospital after a night spent being rehydrated, mutterings under the breath of a doctor in the ER.  Finally, in my third pregnancy, a doctor stood up and spoke them loudly and clearly.  With that knowledge came the realization that I could have had help.  It could have gone so differently for me if I only had known what questions to ask.  So today, I stand here with a zealous desire to shout at the top of my lungs: Hyperemesis Gravidarum! Know what it is and what it looks like. Sharing the truth of it may just help someone else.  I want my suffering to have meaning, my baby’s lost life to touch a heart besides my own, so I say it with zeal: Hyperemsis Gravidarum is real. Know the signs. Get help.

For more information and support, contact the Hyperemesis Education and Research Foundation (HER) at http://www.helpher.org/.  They have a wide variety of information to help pregnant women and their families understand what is happening, what questions to help, find doctors, and more.  Current research indicates that because I have had HG, my two daughters are also likely to have HG. You can help fund research, participate in research yourself and help spread the word so that my daughters – so that all daughters – can have the medical help they need in the future should they find themselves suffering from HG in their pregnancies. HG World Awareness Day: May 15, 2013. Please share this information with everyone. Thank you.