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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.