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Sunday Reflections: The Teen, Me, Genetics and HG (Hyperemesis Gravidarum World Awareness Day)

As I look over at the teen who is sitting on the couch reading a book, she is the spitting image of me in many ways. I could not be prouder to have passed my genetic material onto this glorious child and get to call myself her mom. I love her and her sister more than I could ever have imagined you could love someone.

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Nature? Nurture? A little of both? I’m not sure why she is a reader, I’m just glad that she is because I love talking and sharing book life with her. But there is one thing I hope we don’t share, and that is HG.

hgawarenessday2HG is short for Hyperemesis Gravidarum and it is a pregnancy disease. When you read in the news about Kate Middleton and Kelly Clarkson being so sick during pregnancy that they had to cancel events and be re-hydrated in the hospital – that’s HG. HG is a debilitating, potentially life threatening pregnancy disease and last year the results of a genetic study confirmed what many had feared: it has some genetic components which mean that my daughters are more likely to have HG when they are pregnant. As a mother who fought for her life during pregnancy, this terrifies me.

hginformation

Last week The Teen came home with the paperwork for me to sign giving my child permission to take sex education, but the truth is sex education is something we have been talking about for a while in my house. I have two main concerns when it comes to talking with my teen about sex. The first is consent and healthy relationships. The second is abstinence and birth control. Teen pregnancy is complicated enough on its own, but imagine trying to finish high school while you’re throwing up 100s of times a day and having to go to the clinic to be infused with fluids and vitamins because your body can’t sustain one life, let alone two. I know what it’s like to stand on the brink of death and I don’t want that for this child that I stood on that brink for. I fear teen pregnancy in ways that you can’t even imagine.

Actually, The Teen was my easiest out of three pregnancies, and that’s saying something. The Teen very vividly recalls my pregnancy with her sister. She saw me hooked up to an IV pole day and night. She remembers how we spent the days and nights just lying in bed just hoping that somehow the baby and I would survive. She remembers that someone else had to take her trick or treating that year because her dad was at work and I was too sick to even sit up. She remembers going to the ER and being told that the force of my vomiting was causing the placenta to separate and they were sorry, the baby wouldn’t make it through the weekend. She remembers friends from church coming over to pray with us. She remembers it all.

Today is World HG Awareness Day. I’m always torn on this day. I want to raise awareness and help get donations to the Hyperemesis Education and Research Foundation (www.helpher.org) because I want to know that one day my daughters may have better doctors and better pregnancy care options. But I also want to forget and just put the trauma of HG behind me. I want there to be a day when I throw up because of food poisoning or whatever and don’t flashback to the days of HG where I threw up 100s of times a day and laid in the hospital while my body ate itself to try and survive (metabolic acidosis, not a good time).

I will never be pregnant again. The chances that I would survive another pregnancy are astronomically not good so we went to great lengths to make sure it would never happen again. I want to be free of HG for ever, but I can’t be. I have daughters. HG may be genetic. So I raise awareness. I don’t do it for me anymore, I do it for them.

To learn more about HG, please visit www.helpher.org.

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

Chocolate Chip Cookies and Turkey Sandwiches

Fighting the HG War, an anonymous guest post

My Brother’s Sweatshirt, a story of HG

Sunday Reflections: Why I Care About Kate Middleton’s Pregnancy

“It’s like Bella, without the vampires” – how a YA novel helps me explain Hyperemesis Gravidarum (#HGDay15)

The Lingering Effects of Hyperemesis Gravidarum: the life taking, life altering beast

Sunday Reflections: Why I Care About Kate Middleton’s Pregnancy, reflections on HG

Please share with others to help us raise awareness.  The key to a successful HG pregnancy is early and aggressive treatment.  Get more information at the Hyperemesis and Education Research Foundation (HER) at www.helpher.org

The Lingering Effects of Hyperemesis Gravidarum: the life taking, life altering beast

Today, May 15, is Hyperemesis Awareness Day. Hyperemesis gravidarum, according to the Hyperemesis Education and Research (HER) Foundation, is an extreme form of pregnancy sickness, defined as “unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids.” Affecting about one to three percent of pregnant women, HG can lead to weight loss, malnutrition and dehydration. In severe cases, it can lead to miscarriage and, rarely, it can be fatal.

Having already shared my story many times here at TLT, I enlisted the help of some of my friends, survivors themselves, to share their stories. Today Suzanne shares her thoughts about HG. HG impacts our teens in a variety of ways: a pregnant teen can find themselves suffering from hyperemesis gravidarum.  Or a pregnant mother in the home may find themselves suffering from HG, which has tremendous impact on everyone in the home.

Hyperemesis is a beast that devours babies and mothers.

It took eight years of celebrating my son’s life, the joy I have as his mother, until the deaths stopped overwhelming me.  The due date he shares with his older sister who didn’t survive HG.  I think about my friend who announced her pregnancy the same week I did;  her child did not survive HG. I always think about the mom and twins who died the week my son was born alive.  All of them gone. All of them daily remembered.  But that same week I bake a cake and put up streamers, my grief deepens. Five lives lost in a year and remembered that week. My son, the sole survivor.

 

Some might say these thoughts mean I don’t appreciate or celebrate my son, but nothing could be further from my truth.  But the coincidence of all these dates and deaths make his birthday an emotionally confused time.  So much sorrow mixed in with the date of my child’s healthy birth.

 

Hyperemesis is a beast that chews up relationships.

“It was hard to love you when you were sick,” he said during counseling with a local pastor.  That truth cut me even more deeply than the pending divorce.  When I was most vulnerable and ill, I was not loved?

 

I am certain I was horrific during the short pregnancy that cost me my daughter; it was the worst time in my life. I know our living sons’ pregnancies were awful. I know the PPMADs that I suffered were intensified by the malnutrition and debilitation of HG, and that they made me miserable to be around. And I’m certain the postpartum diagnosis of Fibromyalgia, along with all of its pain and fatigue, made me a very poor partner.

 

But I wasn’t loved?

 

I know I’m not the only mom to hear such things from her partner. It was indescribable devastation on an already broken heart.

 

I’m certain HG contributed directly to the loss of my marriage, my children’s nuclear family, and the financial poverty in which my now smaller family lives.  The divorce also created a new grief: the loss of time of my living children.  I no longer get to be their mother in the way I should be. I am legally obligated to miss them 43% of the time, so they can be parented by the father.

 

Hyperemesis is a beast that swallows emotional safety: in other words, bring on the PTSD

Recently, I was driving on the Interstate to meet a friend for lunch when a wave of dizziness and nausea overwhelmed me.  I knew what was coming; after all, I have much experience with vomit.  There was no time or place to pull over safely at 75 mph. So I scanned for something to save my car from the impending puke. I grabbed an empty coffee cup and vomited violently, all the while guiding my car along the highway, looking for a safe place to stop.

 

I pulled over on a street off an exit ramp and parked. I sat in a puddle of urine from the force of the vomit. Shaking. Sobbing. Wondering where to put my coffee cup. I didn’t know how to get back on the highway, if I should drive with the shaking, crying, nausea, and the problem of the coffee cup. What should I do with my coffee cup full of puke?

 

I texted my friend that I wouldn’t make lunch, that I was ill. Then I waited for the waves of dizziness to pass and found the Interstate. It was long drive home.

 

I was still shaking when parked the car in the garage, went inside, and changed my clothes. It was a deep and intense panic. I paced the house and eventually had to leave its confines. I paced the neighborhood.  My heart was racing. My breathing  shallow. My thoughts spinning. I was hot. I was cold. I had to walk. I could not calm down. Scared. Sick. Alone. I could not stop worrying I’d never see my children again, where all fear and panic take me since HG and since divorce. I was terrified.

 

I eventually knocked on a neighbor’s door.  We sat on her deck with iced tea and talked. Well, I talked and she listened. My panicked thoughts. My frustrations with schools. My financial issues. She listened some more. Nodded where appropriate. Said things to comfort me.

 

I was hours into my full blown anxiety attack when she spoke words that shocked me. Slack jawed and wide eyed, I shut up for the first time since knocking on her door.

 

She asked again. “Could you be pregnant?”

 

The answer should have been obvious since I had a tubal ligation years earlier, my period had stopped., and I am unmarried and celibate. But I had to really think about my answer for a while.

 

“No, that would be impossible.”

 

“You puked once and will probably feel better tomorrow. You’re not pregnant. So what’s the problem?”

 

My heart beat was slowing. “I can’t be pregnant. I’m single, sterilized, and menopausal.”
She laughed, “You see? This won’t last.”

 

She was right. The hours of panic and terror, for I was truly feeling terror, were because I have PTSD from pregnancy. Hyperemesis Gravidarum does that to a woman.

 

My neighbor’s question was exactly what I needed to hear to stop the terror. I was simply sick, not pregnant, not going to suffer through HG for nine months, experience another loss, have my life split open and spit out by the beast. I have PTSD.  It really was just puke.

 

Hyperemesis is a beast that digests joy

The loss of joy in pregnancy is something HG moms frequently discuss when pregnant and postpartum, but a decade later, I don’t think much about that omission. I don’t even give much thought to the dehydration, malnutrition, medications, or mind-altering nausea.  What occupies my thoughts when I look back aren’t the moments of pregnancy lost or endured,  it is how Hyperemesis Gravidarum completely altered every facet of my life.

 

That is my lingering effect from the beast.

Meet Our Guest Blogger:

Suzanne is a writer and teacher of writing. She is teaches in the University of Michigan Summer Bridge Program and is a Writing Consultant in the University of Michigan Rackham Graduate School. She has two sons, one cat, and one guinea pig.  She has had HG three times.

More on HG:

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

Chocolate Chip Cookies and Turkey Sandwiches

Fighting the HG War, an anonymous guest post

My Brother’s Sweatshirt, a story of HG

Sunday Reflections: Why I Care About Kate Middleton’s Pregnancy

“It’s like Bella, without the vampires” – how a YA novel helps me explain Hyperemesis Gravidarum (#HGDay15)

Please share with others to help us raise awareness.  The key to a successful HG pregnancy is early and aggressive treatment.  Get more information at the Hyperemesis and Education Research Foundation (HER) at www.helpher.org

“It’s like Bella, without the vampires” – how a YA novel helps me explain Hyperemesis Gravidarum (#HGDay15)

Today, May 15, is Hyperemesis Awareness Day. Hyperemesis gravidarum, according to the Hyperemesis Education and Research (HER) Foundation, is an extreme form of pregnancy sickness, defined as “unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids.” Affecting about one to three percent of pregnant women, HG can lead to weight loss, malnutrition and dehydration. In severe cases, it can lead to miscarriage and, rarely, it can be fatal.

Karen Jensen here at Teen Librarian Toolbox also suffered this disease with all of her pregnancies and has written about it here and here. This year, her “HG sister” and friend, writer Cindy MacDougall, shares her thoughts on spreading HG awareness with an unlikely help, the final book in Stephenie Meyer’s Twilight series, “Breaking Dawn”.

My third child and only daughter, Naomi, was born in 2006, after a long and hard battle against a hyperemesis gravidarum, or HG. I had two normal pregnancies before this, so the fight I had to put in for my life and Naomi’s life was a shock.

I spent months on my bathroom floor, vomiting into the toilet; I lost 15 to 20 pounds; I broke the blood vessels in my eyes from throwing up. I spent a lot of time in the hospital getting IV fluids and medication.

During all this, my poor husband, Clayton, was frantic. He had to care for me and our two boys, along with running his own business. He was frightened I was going to die. In his stress and his worry, he sometimes lost patience with me, even though he knew the illness wasn’t my fault.

Nevertheless, we made it through those hard times, and Naomi was born alive and healthy.

When Naomi was two years old, Little, Brown published the last novel in Stephenie Meyer’s Twilight series, Breaking Dawn.

Like more than a few grown women I know, I enjoyed Meyer’s novels despite myself.  I knew the writing could be weak, and I understood the relationship between Edward and Bella was problematic and potentially abusive. However, I couldn’t help liking Meyer’s characters, and especially appreciated the positive and rounded representation of Aboriginal youth from the Quileute reservation.

So I picked up a copy of Breaking Dawn that August of 2008, expecting some light reading, and the chance to see the resolution of Edward and Bella’s star-crossed relationship.

I wasn’t expecting to be rocked to the core.

Of course, as we all know now, Bella becomes pregnant soon after her marriage to Edward. The pregnancy is abnormal in many ways (what could you expect from a human-vampire hybrid?), with the baby growing very quickly and it being very strong, to Dr. Cullen being unable to see it through X-ray or ultrasound.

But it was Bella’s illness, her inability to keep down any food or drink, that reminded me forcefully of my pregnancy with Naomi. Bella was going through an accelerated version of HG, and it was killing her.

On page 171, Bella’s best friend Jacob, who is also in love with her, sees her for the first time since the pregnancy began: “There were deep circles under her eyes, dark circles that jumped out because her face was all haggard…Her skin seemed tight – like her cheekbones might break right through it…There was something about her fingers and wrists that looked so fragile it was scary.”

I remember looking in mirrors, seeing my cheekbones jutting out and huge dark circles under my eyes – what many sufferers call “HG eyes.” I remember my family and friends being horrified by how ill I looked.

There’s another part of Bella’s motherhood in Breaking Dawn that I can relate with as well: her absolute determination to protect her baby at any cost, while the family around her want her to live.

Both Edward, her husband, and Jacob, her best friend, are terrified she will die, and are angry at her for risking her life for her baby. While my family supported my choice to fight for my baby, they were extremely worried about my health and the risk to my life.

On page 190, Bella and Jacob discuss the pregnancy and her possible death, as he tries to convince her to have an abortion to save her own life: ”’I’m not going to die,’ she said through her teeth, and I could tell she was repeating things she’d said before. ‘I will keep my heart beating. I’m strong enough for that.’”

Reading Bella’s struggles, which eventually conclude with the birth of her daughter Renesmee and her near death, followed by vampirization, was incredibly painful for me. I had flashbacks to my own illness, and my old IV scars would throb. I cried a lot, too, so much so I began to wonder why I was reading the book at all.

But then it started happening – people started asking me about my illness in relation to Bella’s.

“That vampire pregnancy Bella has sounds a lot like yours!” various friends and relatives said. “What did you have again?”

Other times, I would mention HG, and when asked what it was, I would reply, “It’s like Bella Swan’s pregnancy, but without the vampires and drinking blood. Basically, you can’t keep anything down, lose weight, and get very sick. It sometimes kills women.”

Whereas before Breaking Dawn, people seemed to have no way to relate to my experience, other than to suppose I had morning sickness and was being a drama queen, now many people had a cultural touchstone for what I had gone through.

When I had my second HG pregnancy in 2010, more people could grasp the concept of pregnant and starving to death.

Breaking Dawn gave me one last gift, as well. Near the end of the book, Bella buys her daughter a locket inscribed with the French phrase “Plus que ma propre vie,” which means “More than my own life.”

When I look at my children, and think of what I struggled through to have my last two, and to keep myself alive to mother my two oldest, that phrase whispers through my mind.

They were worth more than my own life. They will always be worth it. And it was a “teen novel” that helped me put it into words.

Meet Our Guest Blogger:

Cindy MacDougall is a writer, mother of four, PR professional and former journalist. She survived HG twice and is a volunteer with the Hyperemesis Education and Research Foundation.

More on HG:

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

Chocolate Chip Cookies and Turkey Sandwiches

Fighting the HG War, an anonymous guest post

My Brother’s Sweatshirt, a story of HG

Sunday Reflections: Why I Care About Kate Middleton’s Pregnancy

Please share with others to help us raise awareness.  The key to a successful HG pregnancy is early and aggressive treatment.  Get more information at the Hyperemesis and Education Research Foundation (HER) at www.helpher.org

Sunday Reflections: Why I Care About Kate Middleton’s Pregnancy, reflections on HG

I tried to hide from the news that Kate Middleton was pregnant. I tried to hide from all of the press. Sometimes I want to put my head in the sand and pretend that Hypermesis Gravidarum, a severe pregnancy illness, does not exist, or that I am somehow so far removed from it now that it can no longer haunt me.

But haunt me it does.

This week I got sick. So I took to my bed and missed a couple more days of my kids lives. I have missed far too many.

When she was 6, I had to have a friend take The Tween trick or treating. I lay in bed, devastated that I was losing yet another memory, another moment of her life as I tried to bring her baby sister into this world.

You see, because of Hyperemesis Gravidarum I had already missed almost 2 years of the Tween’s life. I spent them in the bathroom, vomiting, on the stairs, passing out, in the hospital, being fed by an IV, and in my bed, trying not to lose another baby. I had already lost one – and almost my life – and that was a devastating experience. And this pregnancy, Thing 2’s pregnancy, was in jeopardy from the get go.

Early in the pregnancy, I began bleeding. At the end of my second pregnancy, the one where my baby died and I almost did, I had finally found out the name for what was happening to me: Hypermesis Gravidarum, or HG. Quite literally, HG means excessive vomiting of pregnancy. Not much is known about it, except that it is genetic and possibly auto-immune. And unlike regular morning sickness, HG can be deadly. So with this new pregnancy, we were prepared. Or, at least, we thought we were. We had a new doctor. We had an aggressive plan. We had hope. But then one day, some bright spots of red came to dash those hopes.

We rushed to the ER where there were tests done. They didn’t even have to start an IV because I had been on home IV therapy since the beginning. That was part of the aggressive plan to combat the HG: keep me hydrated, keep me medicated, keep me from throwing up. But even a continous IV and 3 daily meds couldn’t keep the vomiting away. And that day in the ER we learned that the force and frequency of my vomiting was causing the placenta to detach from the uterine wall. Now, more than ever, we needed to stop the vomiting. But as if often the case with HG, there was no stopping it.

Thing 2 is going to be six years old this year. Sometimes I like to forget about HG. Sometimes I like to forget about what it is like to lay there in a dark room, begging for death to come and end my suffering. And yet begging for it not to come and please dear God let my baby be okay. Sometimes I like to forget what it feels like to have six different nurses come in to try and start an IV in the top of your dehydrated hand and how the bruising lasts for weeks. Sometimes I like to forget what it feels like to have tachycardia and low blood pressure as your body starts to shut down from the build up of amino acids or whatever they are called because your body is starting to eat itself and your chemistry goes haywire.

I want to forget all those nights where my husband set his alarm clock for 3 a.m. to change my fluid bags on my IV pole. And I want to forget what it is like to try and teach a 4-year-old how to dial 911 in case mommy passes out – or dies. And I want to forget the sound in my doctor’s voice as he sighs saying, “This is going to be a long pregnancy. We really need to get your vomiting under control so you don’t lose this baby.”

But the truth is, I can’t forget. I have forgotten none of it. Sometimes I wake up in the middle of the night and I can’t go to sleep because the darkness haunts me, it reminds me of those dark rooms I laid in begging God or the universe or whoever to let my baby be okay. And it reminds me of the darkness I felt inside myself as I felt my body closing up shop and giving up. It reminds me of all the dark days in my memory of The Tween’s life because I was in the hospital or in my room struggling to survive. To me, HG is the darkest of darknesses that blocks out whole months of my memory.  What was the Tween like during the summer of the year that she was 5, right before she started elementary school? There is just a void that has been eaten by a monster called HG.

When news broke out about Kate Middleton’s second pregnancy and that she once again had HG, I was not surprised. For most HG sufferers, it comes again. And often worse than the time before. I’m not reading stories about her pregnancy or about HG, I know all too well what it is like. And right now, if I had to guess, I imagine she is just trying to make it through another day. That’s all you can do with HG, try to survive moment by moment. And HG is a tricky beast because even if you have a good day, or a few good days, it can all spiral out of control again without any notice.

Maybe one day, when she is past all of this, she’ll decide that she wants to talk about HG. That she will use her experience and her title to help raise awareness. But the truth is, I’ll understand if she doesn’t. I’ll understand if she wants to put it all behind her and put her head in the sand. Some days, I want to put my head there too. I want to forget the terror and the fight and the loneliness and the uncertainty.

Other times, I speak out. Because as a librarian, I know that information is power. Information is the power to get good treatments. Information is the power to enlist your family to be your advocate. Information is the power to identify the signs and help a friend or a sister or a co-worker. Information is the power to make sure that those around us talk about HG correctly: It’s not a mental illness, it is a medical illness; it does not happen because a woman doesn’t want her baby any more then gestational diabetes happens because a woman doesn’t want her baby; it’s not morning sickness, it can’t be compared to morning sickness, and it can’t be treated by the same methods that morning sickness is; it’s not common (it occurs in less than 2 % of pregnancies); and no, having HG doesn’t mean your pregnancy is healthy, it means the exact opposite because it can put the mother and baby in tremendous jeopardy.

Thing 2 is named in honor of two important people. She is named after my grandmother, who had lost one of her own babies early on and helped me heal from the loss of my second baby; my grandmother who died six weeks before Thing 2 was born, never getting to meet this baby she helped me fight for. And Thing 2 is named after a friend I met at the Hyperemesis Education and Research Foundation (www.helpher.org) who helped me not only with my loss, but helped me daily as I struggled with my pregnancy with Thing 2. This woman, the godmother to my children, has her own losses to bear. You see when she gave birth to her first daughter, they brought a crash cart in to the room because her body had been so ravaged by HG they worried about the stress of the delivery. And in a subsequent pregnancy, she went into a coma and the people who loved her most had to make the heartbreaking decision to terminate her pregnancy so that both her and her baby didn’t die from the HG. HG is a thief and a killer. It is not morning sickness, and I bristle at every article that suggests it is.

A great many of my friends now are HG survivors. We have bonded over our illness, our experience, our battle, our losses. So these past few weeks I have heard them talk once again about HG. We have all been forced to take our heads out of the sand and jump on the HG carousel once again. What we’re fighting is misinformation, because just as information can be a powerful tool, so too can the wrong information. And there is plenty of it out there.

So this is my battle cry: HG is real, it is misery, it is deadly. It is not morning sickness. Find out more at www.helpher.org.

 
Now if you don’t mind, I’m going to go put my head back in the sand and snuggle with these two beautiful children. I don’t want to lose anymore moments or memories, I have lost so many.

Reflections: When is a Prank More Than Just a Prank? What I learned from 13 Reasons Why by Jay Asher

As you have probably heard, there are some serious things happening both in the news and in real life regarding Kate Middleton and her pregnancy.  It turns out, Kate has HG – Hyperemesis Gravidarum.  Those of you who frequent this blog know that I am passionate about raising awareness and were probably surprised by my silence on the subject.  The truth is, I did spend some time Tweeting about it.  I also spent some time remembering my experiences and shed a few tears. So here is what I want to say:

Kate Middleton, according to the press, does not have morning sickness. She does not have severe morning sickness.  She has Hyperemesis Gravidarum (HG).  A debilitating, life threatening pregnancy illness that can cause severe complications for both the mother and child.  She is in for a rocky road ahead and I hope (and yes I have even been praying) that Kate responds well to treatment and that her HG is kept under control so that the impact on her mind and body are minimized.  I think if anyone is in a position to get good treatment, it is her.  I am sad to hear that she has HG because I wish it on no one.  I am sometimes thankful that HG is getting the publicity that it needs, although that publicity has often been wrong.  (For some of the best media coverage of HG, check out this video segment from the Katie Couric show.)  To get good and accurate information, I implore you to visit the Hyperemesis Education and Research Foundation at www.helpher.org.

But let’s talk about the Prank Heard Round the World

The other day, Australian radio DJs called the Duchess in the hospital by pretending to be the Queen.  Possibly in response to that prank, one of the nurses involved – the nurse who initially put the call through – took her life.  The Internet has been abuzz with opinions regarding culpability, mental stability, etc.  From the get go, the prank made me angry.  Like, frothing mad seething angry.  Why?

An Illness By Any Other Name
The DJs involved felt that it was somehow appropriate to call in and harass and make fun of a woman who was sick and wrestling with a serious situation.  Personally, I don’t care what type of sickness a person has, your job is step back and let them recover in peace.  But no, they felt that it was somehow a good idea – and within their rights – to call and harass and mock a sick person.  Keep in mind, one of the main purposes of a hospital is to take care of the sick and dying – why do we think they have time to deal with pranks? Would we have thought it was funny if she had cancer? A heart attack? An organ transplant?  No, but it was just “morning sickness” right?  Silly girl, can’t handle a little bit of morning sickness.  And yet, what she was dealing with made her become so dehydrated that she was placed into a hospital for several days so that she could be properly hydrated.  Take a moment sometime and Google what happens when your body becomes dehydrated.  Or I could save you the effort and tell you – it is painful, terrifying, and soul wearying.  But it doesn’t matter what she had, you leave a sick person alone so that they can rest and heal.

Want to know about HG and my personal story?
Want to know what it is like to be so dehydrated that you have to go to the hospital for IV fluids?


The Right to Medical Privacy
Then we have the issue of medical privacy.  I am not sure how they regard medical privacy outside the U.S., but here it is a sacred thing.  What happens to you medically is designed to be kept between you and your doctor.  Part of the reason for this is so that it doesn’t impact your future life; employers can’t discriminate against you based on your medical history because they don’t have access to it.  Your family, friends, neighbors, strangers – none of them have a right to know because information can have consequences.  It can create bias.  It can change perceptions. It can change opportunities.  Also, there is an emotional component to our medical lives. When we are sick, whatever that sickness may be, we have a right to process and deal with that information privately on our own terms and on our own timetable.  I get to choose when and how to tell the world I have cancer so that I have the time I need to figure out how I feel about this fact.  I get to choose when and how to tell the world  about my HG experiences.  I am very open about my experience, but I have had time to process what happened to me.  I had time to grieve the loss of my baby.  I had time to heal and not be terribly afraid of being sick or of going to the doctor.  I had time to come to terms with the fact that I can never have anymore children because of HG.  By trying to make Kate and her family go public with her medical information, those DJs were robbing Kate of all that we respect and value regarding medical privacy.  They took the control away from her and alienated her basic human rights.

Your Job’s in Jeopardy
And finally, by pulling off this prank, they put everyone at the hospital in incredible legal risk.  They jeopardized their jobs.  In order for their prank to work, the hospital staff had to put the call through, which they did.  By putting the call through the hospital staff was in incredible legal peril.  They had become unwilling co-conspirators in all of the above.  They violated their patients right to medical privacy. They put these DJs, and the world, in the position to mock and laugh at a sick, hospitalized woman.  Every person in the hospital was now in legal peril and the truth is, they were probably going to lose their jobs.  Not only would they lose their jobs, but given the widespread nature of the prank – it went global – they were more than likely now unemployable in the field in which they had trained and worked.  They were now going to have incredible difficulty feeding their families, paying their rents, etc.  If it wasn’t happening at the time, I assure you the wheels were in motion.  You don’t break your employers rules in such a public way without there being consequences.

If You Poke a Bear with a Stick . . .
There is an underlying cruelty to pranks; by pulling a prank you are seeking to get your enjoyment and satisfaction at the expense of others.  Your laughs come courtesy of putting another human being into a situation and the truth is, unless you know that other person intimately, you really don’t know the emotional ramifications of what you are doing.  You may be pulling an elevator prank on a person who has severe claustrophobia that spent the morning psyching up for an elevator trip.  You may be pulling a prank on a person who found out last night that their spouse has cancer, that their child is failing, that their world is falling apart.  You may be pulling a prank on a person who spent all of high school being bullied and is in an emotionally sensitive place every day.  What you are doing is taking a gamble with someone else’s emotional and physical well being – a gamble that you have no right to take because you can never know the full ramifications of any given situation for another human being.  And yes, you do bear the burden of responsibility for your actions.  Even if the other person’s reactions don’t make sense to you, you – the prankster – bear the burden of responsibility for pushing a button and flipping a switch that you had no right to do, and all for the sake of a laugh. 

“No one knows for certain how much impact they have on the lives of other people. Oftentimes, we have no clue. Yet we push it just the same.”  – 13 Reasons Why, Jay Asher

A Bully by Any Other Name
A prankster is nothing more than a glorified bully.  They are using another person – unwillingly – to generate a laugh. A prankster is the HS bully who gives the class geek a mega wedgy while everyone in the hallway laughs.  A prankster is the mean girl who slut shames, the boy with the shock gum who delights in seeing that jolt of pain when their victim is zapped, the group of kids at prom with the bucket of pigs blood.  While we are taking a stand against bullies, let’s remember that pranks are often just another form of bullying because it comes at the expense of another human being without their consent and without knowledge of the impact that it has on them.

“You don’t know what goes on in anyone’s life but your own. And when you mess with one part of a person’s life, you’re not messing with just that part. Unfortunately, you can’t be that precise and selective. When you mess with one part of a person’s life, you’re messing with their entire life. Everything. . . affects everything.” – 13 Reasons Why, Jay Asher

One can’t help but think in this situation of the book 13 Reasons Why by Jay Asher.  The main idea behind this book is that our words and actions have consequences.  We may not even see them at the moment, but there is a recipient on the other end and we can never fully understand the impact we are having.  Sometimes we see it too late.  This is why we must think carefully before we speak, step lightly on the path of other lives.  When we come in contact with another life, we leave our finger prints on it.  That is a huge responsibility to bear, we should not do so as lightly as we often do.

“No one knows for certain how much impact they have on the lives of other people. Oftentimes, we have no clue. Yet we push it just the same.” – 13 Reasons Why, Jay Asher

My 1 Birthday Wish

Today is my birthday! I am 29. Again.

I know you are thinking, what do you want for your birthday Karen?

As you know, in addition to trying to be an awesome ya librarian, I also have a strong passion to raise awareness about a pregnancy disease that I suffered from 3 times: Hyperemesis Gravidarum, also known as HG.  No, not the book.  HG is a life threatening, soul sucking disease.  Women still die in pregnancy.  And sadly, babies die.  One of my babies died.

 

Earlier this year for the first ever HG Awareness Day, I combined my love of books with my goal to raise awareness of HG to create something that I called The ABCs of HG: An unconventional picture book.  Here I tell you the story of my 3 pregnancies using a traditional picture book format.  I wanted to try and let others know what it is like to fear dying, to beg to die, to consider terminating a pregnancy for medical reasons and to mourn the heartbreak of losing a baby to HG. My one birthday wish is that I could somehow find a way to get this book published so that I could donate the proceeds of each copy sold to the Hyperemesis Education and Research Foundation (the HER Foundation).  I even have an ob/gyn lined up to do a chapter(s) presenting factual information as a part of the book because awareness and education are our goals.  One day I hope my birthday wish will come true.  Until then, friends and family members can donate to either the HER Foundation or their local library instead of buying me presents (not that I expect presents). 

 

You should also know that recently on Twitter we planned my ideal birthday party.  It would take place at the Container Store (I do love to organize things) and we would play YA Lit Charades and do Karaoke with Libba Bray.  There would be cupcakes of course.  Surely Libba Bray wants to come do Karaoke with me for my birthday, right?  There has to be lightsabers and smog of course.  Those of you who were at the Austin Teen Book Festival know what I’m talking about.

For my birthday, please visit the HER Foundation and take a moment to learn more about HG.  You may help someone get the treatment that they need.  Remember, HG does not discriminate, pregnant teens can get HG too.

Setting out to fight the HG war, an anonymous guest blog post

Today in the midst of World HG Awareness Day, a friend posted this analogy on her Facebook wall.  All day today us HGers have shared our stories, shared facts, and thanked our loved ones and doctors for walking this HG journey with us.  But, we have also struggled for words to help those outside understand.  Then she posted this analogy and I thought . . . yes . . . exactly.
In a way, by setting out today to raise awareness, we have declared another type of war against HG – a war against misinformation and poor care.
I hope the analogy doesn’t offend anyone – and it might if you’ve never lived through it yourself – but I’ve long thought HG pregnancies are like deployments.
You get your orders (pregnancy test), you know it’s going to suck, but you have a mission to fulfill.
You have to say goodbye to your loved ones, are unable to participate in life for many months, and you live with the full knowledge that yes, you might die, your baby might die, and that many others have given their lives in the fight. 
And even after the pregnancy ends, whether successfully or not, memories and flashbacks will haunt you. 
But… it’s worth it. And it changes you in a way that from that point forward, the people who “get you” the best are very often the other “HG vets” – it creates a lifelong bond. Anyone else who went through the same thing is considered a sister to you. All the women who go through HG are heroes in my eyes.
Thank you all for joining us today and allowing us to share our stories.  Thank you all for being willing to learn about something new.  Thank you all for joining our fight against HG.  You can continue to share the information by directing others to all the HG links under the World HG Awareness Day link or by visiting the Hyperemesis Education and Research Foundation (HER Foundation) at www.helpher.org.

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.