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Chocolate Chip Cookies and Turkey Sandwiches: World HG Awareness Day, May 15

As a librarian, when you hear HG you probably think about The Hunger Games by Suzanne Collins.  But for me, HG is a different type of hunger games, a very real one.  HG stands for Hyperemesis Gravidarum.  It is literally translated as excessive vomiting during pregnancy.  Before IVs and PICC lines, women died from HG.  Truthfully, women still die from HG, but it is more rare. 

Recent research sponsored in part by the Hyperemesis Education and Research Foundation (HER Foundation) indicates that there is a genetic component to HG.  As the mom to two little girls, this breaks my heart.  The fact that if they choose to have children they may have to suffer the way I did is inconceivable – and this time I am pretty sure it means what I think it means.  With better awareness and more research we can find better treatments and make sure that women can get early and aggressive care.  It’s easier to treat more successfully if intervention happens before a woman spirals out of control, before her body systems are already starting to shut down.

During my first pregnancy, with the lovely Miss Kicky, we had no idea what was happening.  For 9 long months I slept on the bathroom floor and dreamt of one day being able to eat food again.  Remarkably, after giving birth to Kicky – almost immediately – I felt completely fine and developed a ravenous hunger.  The nurse asked me if I wanted to eat and I ordered a cheese burger, fries and chocolate chip cookies.  When they got ready to move me into my room I asked The Mr. to watch my cookies, he said he would keep an eye on them.  I yelled at him, “No – pick the cookies up in your hands and make sure nothing happens to them.”  And then, after a very brief pause I added, “and make sure nothing happens to the baby.”

I swore after having Kicky that there would be no more pregnancies, but I loved my daughter and loved being a mom and, you know, each pregnancy is different they say.  What that means is that each pregnancy is WORSE.  For unknown reasons my second pregnancy was so much worse than the first.  Between my 6th and 7th week of pregnancy I lost almost 30 pounds from the excessive vomiting.  The only thing that would stop the vomiting was for me to lay in a hospital bed hooked up to an IV.  But every time I stopped vomiting, they sent me home and the cycle started all over again.  I began passing out.  I developed tachycardia.  My blood pressure became dangerously low.  My body began shutting down.  I begged to terminate my pregnancy.  I begged to die.  And then, my baby – Casey Lee – did die.  Actually, she/he had been dead for 3 weeks – around the time the HG had gotten extremely bad.

I found out I was pregnant with my third pregnancy just days after my grandfather’s funeral.  My grandma and grandpa had a baby that had died just months after being born in the 1940s, their first, and they had helped me deal with my pregnancy loss so much.  I knew that they had prayed for me to be able to have another child.  It was bittersweet that I found out at my grandpa’s funeral; he had carried a picture of his dead baby boy in his wallet every day of his life and was buried with it.

We knew more now in this third pregnancy, but that didn’t necessarily make it any easier.  We found a new doctor and got early, aggressive treatment in the form of home health care.  I sat at home attached to an IV pole to keep me hydrated and medicated.  The Mr. set his alarm clock and woke up every morning at 3 a.m. to change my IV bags.  Yep, he’s a keeper.  But I still vomited – a lot.  In fact, I vomited so much and with such force that my placenta was slowly separating from my uterine wall.  We went to the ER on the 4th of July weekend because of bleeding and the doctors came and gathered around my bed and told me that they were sorry, my placenta was completely detached and our baby wouldn’t make it through the weekend.  They were, thank you God, wrong about that.

After 9 long, torturous months, Scout was born.  6 weeks before my grandmother passed away.  I was not able to go to her funeral because of the HG, but I named my baby after her.  Like before, birth resulted in a ravenous hunger.  This time it was turkey sandwiches.  I ate them for breakfast, lunch and dinner for weeks, happy to finally be able to eat solid food again.

HG was the most horrific experience of my life.  It caused me some lifelong health complications.  It took one of my children.  I lost 3 years of my life – of my children’s life – as I fought to survive, barely.  I threw up over 1,000 times over the course of those 3 years and I cried more than a million tears; although my tears were often dry due to the dehydration.  After giving birth to Scout I knew that I could never be pregnant again.  The chances that I would survive were slim, and I didn’t want to miss any more of my life, of my children’s lives.  Plus, Scout had some health complications that may or may not be related to my HG.  They say that HG doesn’t harm the babies, but recent research indicates that there is a higher incident of neurological problems and, although there has been no research done to prove this, 95% of the women I have met with HG babies report that those babies have some type of gi and food issues.  I hope that one day that will be something that they study as well.

I am blessed to be a mom to Kicky and Scout, they are amazing little girls.  I love them more than I could every imagine loving.  They were worth every horrific moment of HG, but that doesn’t stop me from wishing my pregnancy story could have been different.  Because I want the story to be different for others, I share mine.  Please take a moment to make yourself familiar with the signs and symptoms of HG.  You may just be able to tell some woman in your life how she can get help.  Also, please visit the Hyperemesis Education and Research Foundation (HER Foundation) to find out how you can donate and participate in ongoing research.   www.helpher.org

Please take a moment to view all of our posts on HG here at TLT

The ABCs of HG: an unconventional picture book (Karen’s story)

Teen Issues: Teen Pregnancy and Complications

Teen Pregnancy and Complications, HG and pregnancy termination (An anonymous story)

Life’s Bilest Moments, HG poetry

There’s No Sister Like an HG Sister

We were going to have a brother but got a sister instead, a tween’s story

World HG Awareness Day, just the facts

Just the facts: HG

Today is HG World Awareness Day.  As you know, I have had HG 3 times.  After my first bout of HG, I swore I would never get pregnant again.  I had no idea that my first pregnancy would turn out to be me easiest.  My second pregnancy almost killed me, and it did kill my baby.  During my third pregnancy I had better, pro-active care, but I still spent months on being fed via an IV and almost lost my child because the force and frequency of my vomiting was causing my placenta to separate. At 19 weeks they told me they were sorry, my baby was not going to make it.  She did make it, my little miracle, but after 3 years spent barely surviving, almost dying, and throwing up more than 1,000 times, I knew that there would be no more children for me.
You see, you remember that time when you got food poisoning so bad and you threw up all day and night and became so dehydrated you could barely lift your head off your pillow.  The next day you went back to work and told everyone it was the most horrible experience of your life and you hoped to never be that sick again.  Yeah, that’s what HG is like – except it is 24/7 for 9 long, torturous months.  In several of our HG World Awareness Posts we have talked about the emotions of HG, today an ob/gyn talks about some of the medical facts and highlights the need for better research and health care protocols.  The only thing that helped me in my last pregnancy is the fact that my new doctor had some experience treating HG and was willing to give me the medications that my first doctor wouldn’t. Well, that, and the liquid nutrition that came from home health care.

Most women will have some nausea in pregnancy. Even normal nausea in pregnancy will often force women to change their routine in order to cope with it. For about 1% of women, the nausea and vomiting of pregnancy becomes so severe that it can cause weight loss and dehydration. This condition is called HG gravidarum (HG).

Before the age of modern medicine, it was common for women to die from HG if their babies did not die first. While maternal death is very rare now, it still does occur, and other complications such as kidney failure, esophageal tears, malnutrition, ulcers and neurologic complications are still seen far too often. There are consequences for the baby as well. Traditionally, it was assumed that the baby takes what nutrition it needs from mom and does not suffer any consequences from HG. However, newer research has shown that there is a higher risk of miscarriage in the second trimester of pregnancy when the HG is most severe. There may also be a higher risk of certain neurodevelopmental disorders. Termination of pregnancy occurs in 10% of pregnancies, often in desperation when effective care isn’t offered.

The good news is that good medical care can prevent most of these complications for both mom and baby. Prevention is the first step. When women come in very early in pregnancy, I will ask them about nausea and vomiting.  Even if they only have mild symptoms at that visit, I will recommend more rest, changes in their vitamins, discuss over the counter medications that are safe and effective, and instruct them to call if symptoms get worse. Studies have shown that doing these things will prevent some of them from developing HG. If they do have weight loss, or show signs of dehydration, then other treatments that can be used are prescription medications (often the same medications people receive for nausea associated with cancer chemotherapy), IV hydration, IV nutrition, and tube feedings. Women who have had HG before need the aggressive treatment even with the mildest symptoms. Without it, about 80% will get HG again.

If there is effective and safe care available, why do we still see so many of these complications? While some women are unable to get care before complications arise because of lack of medical coverage or cost, many do seek care, and yet don’t get treatments that we know are safe and effective. Why not? One reason is that doctors see many women with normal nausea and vomiting in pregnancy and very few women with HG, many of them will become complacent and ignore HG as well. Also, some doctors (and many well meaning family, friends, and patients themselves) are concerned about potential risks to the developing fetus from using medications even when the medications we use are clearly safer than the alternative. And last, for some women the medications that we have available are not enough to keep them from vomiting and allow them to stay hydrated and nourished on their own. For these women, the lifesaving treatments that are used also have the chance of severe and life threatening or life changing complications.

There is still very little research in to HG, and we desperately need more in order to learn better ways to treat all women with HG safely and effectively in the future. We also need to educate those medical providers that see women with HG so that we do a better job treating women today.
Some symptoms of HG:
  • Ketosis
  • Vitamin/electrolyte deficiency
  • Anemia
  • Liver enzyme elevation
  • Gall bladder dysfunction (stones)
  • Dehydration
  • Low blood pressure
  • Jaundice
  • Rapid heart rate
  • Overactive thyroid
  • Weight loss of 5% or more (from pre-pregnancy weight) – I lost 30 lbs in about a week
  • For more information, please visit the Hyperemesis Education and Research Foundation (HER Foundation) at www.helpher.org

    There’s no sister like an HG sister

    You would think that since this weekend is Mother’s Day, I would talk about being a mom.  But instead, I want to talk about sisters.  You see, I am very lucky in that I got to give my daughter a sister.  Not that she always appreciates it to be honest; you should hear the two of them fight.  There are 6 years of age between the two of them.  And, as it is, my youngest child almost didn’t make it into this world – multiple times.  My oldest child could just as easily have been an only child, a daughter without a sister.  Thankfully, miracles sometimes still happen.

    Photograph by Sarah Elizabeth Photography http://www.sarah-e-photography.com

    But this post is not just about my quest to give my daughter a sister, but about how I found “sisters” of my own.  This post is part of my ongoing effort to raise awareness about a debilitating, sometimes fatal pregnancy illness that I had.  A disease experienced by 1 out of 1,000 women – a sisterhood of HGers.  You see, when you travel the lonely road of unknown and misunderstood diseases, you join a sisterhood.  Without a doubt, I would rather have not joined this sisterhood – but I am so thankful to have these women in my lives.  They are survivors and fighters.  They are wounded and changed, but they live life with a new understanding and appreciation.  So today, in celebration of the first ever World HG Awareness Day on May 15th, I share with you a post I wrote a while ago called “There’s No Sister Like an HG Sister” . . .

    I was not born with a sister, but I have been blessed to have many. There is nothing quite like a debilitating, life threatening disease to bring people together. Honestly, I would rather not be cursed to have Hyperemesis Gravidarum (HG) in my pregnancies. But if I have to have it, at least I get these wonderful new “sisters” out of the deal. And my babies, they get to have all these “aunties”.

    The thing about a disease is no one, and I do mean no one, can understand what it is like unless they have experienced it themselves. Someone who has experienced HG wouldn’t bat an eyelash when you declared that you begged God to die and just let it be over. Of course you did, they would say, who doesn’t? When, in a moment of complete and utter honestly with yourself and the universe, you admit that you had thought about ending the pregnancy they would react with – compassion. There would be no gasp and declaration of how could you think such a thing, because they know how you could.

    You know how in the old Looney Tunes cartoons someone would be wandering in the desert dying of thirst and they would suddenly see a mirage appear? It turns out, that is not so much of an exaggeration. You see, you can be that dehydrated and it does start to take you to the edge of psychosis. And an HG sister, she can listen to what you are saying and, without pausing for a beat say, “You know, I think you should go right now to the ER and get some fluids. You sound really dehydrated to me. Don’t say or do anything until you are hydrated and in a better frame of mind.” And they are always right.

    The truth is, my children owe their lives more to my HG sisters than to my doctors – and that is not really a big stretch. They were there, day in and day out suggesting treatment options to mention to my doctor, holding my hands during the days that I begged to die, and rejoicing when I had a day where I didn’t feel quite so – on the verge.

    I have had the privilege to meet many of my HG sisters, and they are just as fabulous as you would think they are. I have mourned with many of them. And I have rejoiced with many of them. Their children are dear and precious to me – all of them, those that did make it and those that didn’t. I love to hear about them: the first time they crawled, the first time they took a step, the first time they said “mama.” These children, and their mothers, they are a part of me – a part of my life story. And I cherish them. When someone saves your life, there’s kinda no walking away from that. You are bonded in ways that you can’t imagine.

    And when you mourn together . . . there are no words. I must admit that I know a devastatingly large amount of angel babies. And sadly, I have one of my own. And my HG sisters, they always remember. They know that in the deep dark corners of my heart there is an empty space with the name Casey written on it that nothing, no other baby, no amount of love and joy and peace, can ever fill. They know that I wake up in the mornings wondering “what if” and go to sleep at night saying “I miss you”. And many of them, they have their own heart spaces with different names. And we help each other with this truth, too. It is a horrible, gut wrenching truth – but the fact is, HG can be devastatingly hard for the mom and quite deadly for the baby. It is true, woman still die in pregnancy. At the end of 9 months, no matter how hard you fight and how much you pray, there is not always a baby. Sometimes, after days and months of suffering, there is . . . a heartbreak that you never fully recover from.

    I know, and love, HG sisters who now are dealing with life long health consequences from HG. Their bodies are deteriorating. Their health is not the same. They are not the same. You see, when you have stood at the edge of a cliff and looked down into the abyss called maybe death – you don’t walk away from it the same. You are different. You are changed.

    And at some point every HGer will have to make a heartwrenching choice: can I do this again? There is a heartbreak that comes from wanting to have more children but not being able to. Many people experience this heartbreak for different reasons – infertility and other health issues. But at some point, every HGer will have to face this question. Many of us have the decision taken away from us completely – there is too much damage done to our bodies, there is too much risk, there are not good enough viable treatment options. Others, well – we just don’t want to go back up onto the cliff and take a chance of staring into that abyss again. One day, you may get too close to the edge and finally make that fall. There is only so much a doctor can do, after all. And every treatment option that you have available to you comes with its own risks.

    So I watch the children that I am blessed to have grow, I watch my HG babies grow, and I thank God for my sisters. They were not born unto me – they were thrust onto me with all the grace of a newborn trying to navigate a hostile world. But I would not be alive without them. My children would not be alive without them. And in many ways, I love them more than I could any natural born sister for they, and they alone, know the deep down secrets of my heart. They know what I mean when I say you know how or remember when or I felt this . . . They know it in a way that not even my husband, who saw it all, can ever know. For they haven’t just seen or heard, but they have FELT.

    So now there are new places in my heart. In fact, next to the empty spot named Casey, there are new spaces with the words Erika, Aimee, Marti, Sarah, Mel, Suzanne, Jessica . . . so many names. More names then I could have ever imagined. They have each helped me in their own special way. And they wait to help others and add more names onto their hearts, to add more children to their families. For when a community works together to bring a child into the world against terrible odds, the community adopts that child. I can’t even begin to tell you how big my family is these days. And I rejoice each time it gets bigger.

    If you know someone who has or is suffering from Hyperemesis Gravidarum, they can get help and support at the Hyperemesis Education and Research foundation (www.helpher.org).  To see all of our HG posts for World HG Awareness Day please go here.

    Life’s Bilest Moments, HG poetry

    As we draw closer to May 15th of this year, we draw closer to the first ever World Awareness Day for Hyperemesis Gravidarum.  HG is a debilitating, life threatening pregnancy illness.  I have struggled with it in three pregnancies, with only two living children to show for it.  My second pregnancy was by far my most horrific experience; in a little over a week I lost 30 pounds and my body began to shut down from the excessive vomiting.  My baby, Casey Lee, did not survive; at around 10 weeks we found out that she had died around 6 and a half weeks.  During the months following my experience I turned to an old friend to express my physical and emotional pain, poetry.  This is my HG poetry.

    An Open Letter to HG

    Life a thief in the night
    You stole my joy, my dreams
    I was fine before I met you
    Stumbling, perhaps, as is often the case with life
    But you knocked my feet out from under me, stole my breath
    and broke my heart

    Who I was before, a memory
    Who I am now, a nightmare

    Tragedy is the stuff of great fiction
    Yet this has somehow become real
    The torture and torment bleeding off the page of make believe
    Into the landscape of my reality
    My feet no longer touch the ground, for I am flat on my back
    and my eyes can no longer produce tears

    Who I am now, a nightmare
    Who I am becoming, a new creature

    As the beat of time marches on
    There is a soft touch of healing, a gentle hope of repair
    But there are places that no balm can soothe
    And the tape sometimes does not hold the pieces together
    The jagged edges become smoother, but the pieces don’t fit the same

    Who I am now, a new creature
    Who I am becoming, a mystery

    What HG Has Done to Me

    You don’t know me now
    Warm smiles
    Raucous laughter
    That was all before

    Before the flood of vomit came pouring out of me
    Ripping out my soul, my mind
    Taking with it the sure knowledge
    of who I am
    and what I am capable of

    All that is left is the memory
    of dark rooms and dark places
    in the corners of my mind
    that I did not know existed
    and fear may rise again

    There is no joy in creating life for me . . .
    Just the endless torment of days spent hoping, to no avail, that I could eat, or drink, or at least sleep until it was over

    At the end of each day there is no hope
    Just the prospects of another day with this new person
    Merely a shadow of my former self
    for a part of me died with you
    and now there is no reward

    An Inconvenient Grief

    There was a crib in a room
    waiting for you
    I would peek in with awe

    In that crib was a pillow
    with Winnie the Pooh
    I bought it before I knew I was pregnant
    but somehow, I must have known . . .

    That was all before the terror came
    the terror of knowing
    you were slowly dying,
    your heartbeat fading
    there was a moment when I knew
    but the sickness would not fade
    and we were so afraid
    that you may be suffering, too
    for how could my body
    which could not sustain itself
    be a haven for you?

    Sometimes in all the pain.
    moments when I could not rise off the floor
    bile and blood flowing
    because there was no food left to purge,
    it was hard to remember
    the possibility of joy . . .
    the finish line was far
    and my body couldn’t break the tape

    My body now your tomb
    My heart slowly breaking
    My mind unable to comprehend

    There was a crib in a room
    now it sits in an attic
    sometimes I look in and
    tears stain my cheeks
    I am startled by the bed
    that fills the space
    I hold the pillow
    adorned with Winnie the Pooh
    and weep the melancholy sorrow
    of a mother
    who mourns a child
    she never got to hold

    Your Fading Heartbeat

    From the very first moment
    every sign seemed to say
    something was wrong
    there was a panic
    that is worse than not knowing
    for I heard it that day
    in the slow beat, beat, stop, beat
    of your heartbeat
    that you were slipping slowly away
    and that day, I began to mourn
    as I mourn still
    for I do not get to hold you
    when I look at your sister’s face
    I wonder
    the wonder of the mother with a broken heart
    what you would look like
    how it would feel to hold you
    what tinkling sound your laugh would make
    but instead the only sound I have
    is the slow beat, beat, stop, beat
    of your heartbeat
    the pounding drum of dirge
    that mocks my longing
    and haunts my dreams
    so when I join you in heaven
    I want to hear you sing
    so that your song
    can replace
    the slow beat, beat, stop, beat
    of your heartbeat
    that rings still in my ears, in my head, and my heart
    sing now in glory
    make a new sound
    and let me hear it in the wind

    Drowning in My Tears

    I am drowning in a sea of tears
    Trying to hold my head above the water
    You bore the burden of my sins,
    Can you bear the burden of my sorrow?
    Do you sob as my body writhes in emotional pain?
    Cup my tears into your hands,
    Drink them in
    May your angels wings brush my cheeks
    And dry my tears
    I do not want to be on this path
    wandering in this sea of desperation
    My empty arms ache with longing
    Shattered heart, do you have the pieces
    to put me back together again?
    What has happened to the piece named Casey?
    Is she near, can she hear
    as we cry out for her


    Before you were
    you were
    a part of me
    flesh of my flesh
    desire of my heart
    even if I did not yet know it

    Before you were
    you were
    a part of family
    a child of mine
    a sibling
    a love
    a wish
    a dream

    Before you were
    you were
    a gift
    to expand my heart
    to teach me about
    and fighting for the right
    to be called

    Before you were
    you were
    a vessel of grace
    for though you did not make it here
    your story lives
    to tell
    so that their becoming
    may become
    a dream come true

    Before you were
    you were
    and always will be
    longed for
    for your angel wings
    are becoming
    your message of hope
    your gift of grace
    the instrument on which your song is played

    The Wonder of Your Little Hands

    This morning I woke to the touch
    of a hand brushing my cheek
    and I thought of the little fingers
    that would never wrap mine
    of the little toes that would never be
    of the silent claps that echo
    in the hollow spaces in my heart
    where a picture of your face should be
    instead there is only a thought
    of the wonder of your little hands
    that I can never hold
    or touch
    or feel
    or kiss
    may God take your little hands
    and hold them safe and sound
    until the day I see you
    and place my hand in yours
    and complete the chain that is
    your family

    My poetry collection is called Life’s Bilest Moments because with HG, you vomit so much you will not be able to keep anything down and, eventually, there will be nothing left but blood and bile coming up.  Your skin and lips will crack from the dehydration.  You either take up residency on your bathroom floor or name a bucket by your bed your new best friend.  You will lack energy, joy . . . hope.  Hope only comes for those who can identify the symptoms and can demand the appropriate care to keep HG from spiralling out of control.  1 out of every 1,000 pregnant women of all ages will suffer some form of HG.  HG is no respecter of age, race, or culture.  The only thing we seem to know for sure right now about HG is that there is a genetic predisposition; because I have had HG, it is more likely that my daughters will have HG.  I am fighting to raising awareness and research for my daughters – for all of our daughters.
    For more information about Hyperemesis Gravidarum, please visit the Hyperemesis Education and Research Foundation (HER) at www.helpher.org.  There they have basic information for women, family and friends as well as resources to help find doctors and more.  They also have support forums for women to share their stories.  You can learn more about my personal story by reading The ABCs of HG, an unconventional picture book.  Early and aggressive treatment can help make HG so much more bearable, so please take a moment to learn the signs.  One day you may see a woman in your life suffering from HG and you will know how to help her.  With the knowledge, finally, in my third pregnancy that I had HG, my husband and I knew what questions to ask and were able to seek out a doctor who had more experience handling an HG pregnancy.  Because of that knowledge, our second child is here.  Thank you (and sorry for the bad poetry).