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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.

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