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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