Hyperemesis Gravidarum, a princess, and regular ol’ me- Kate Middleton and I have something in common

Kate Middleton Pregnant, pregnancy, HG, hyperemesis gravidarum

I am a terrible, rotten, no good person.  I just celebrated when I read that the Duchess of Cambridge is suffering from Hyperemesis Gravidarum in her pregnancy and was admitted to the hospital for IV fluids.

Then I sat in the local coffee shop and wiped away tears.

I’m not actually happy that Kate Middleton has HG, I feel for her a little too well.  A year ago I was in the thick of my 6th battle with HG, a PICC line in my arm and about 16 pounds below my prepregnant weight (much better than the close to 40 pounds I lost with my 1st).  I barely ate and a great day was throwing up only 12 times.  We were excited because it was my best pregnancy yet.  And it still sucked.  I wouldn’t wish HG on my worst enemy, it ruins pregnancies, wrecks families, trashes the mother’s body, and in the worst cases takes lives.

My experience with HG has been traumatic.  The end results have been beautiful babies and I’d go through it all over again for them but HG has changed me physically and emotionally.  I have struggled to put into words my experience with my first 3 pregnancies so painful are the memories.  We’ve come a long way in the 14 years since I had my first but even so I still hear doubt that maybe this whole thing is in my head.  Often from strangers, regularly from health care professionals, sometimes from people I know, and once in a while from myself.

Insertion of my last PICC

There may be one person I would wish HG on, the doctor that told me that if I really wanted my baby I would stop throwing up.  My will would be strong enough.  Throwing up was my subconscious trying to rid my life of this baby.  I would stop throwing up if I actually wanted her.  That if I didn’t then I should just terminate her because I wouldn’t love her anyway.  This doctor didn’t tell me there was a name for what I was experiencing and told me my IV line would be pulled after 2 bags of fluid and I’d have to prove that I wanted this baby.  At four months pregnant I was 83 pounds.  But I wanted my baby, I really did.  I couldn’t understand why I was so weak, why my body was betraying me.  What horrible thoughts and feelings about my baby was I hiding from myself?  How could I change them so I could stop throwing up and could keep my baby?  Why wasn’t I strong enough to stop throwing up?  Broken and my husband traveling, I agreed to the termination because I had 2 children already and I didn’t want them to be motherless.  I was so afraid of dying that I died on the inside.

Napkins don’t wipe up tears and snot so well.  I want to explain to the people shooting concerned looks my way but saying I’m crying because Princess Kate is sick just won’t come out right.

So why would I celebrate and then break down in tears upon hearing that the princess has HG?

Seeing that Kate Middleton has HG, is receiving media coverage, medical care, and the support of people all over the world has turned me into a blubbering fool sitting in a public space.  I’m not her and she’s not me, but a person, a celebrity, a REAL PERSON EVERYONE WOULD RECOGNIZE AS BEING A REAL PERSON (and not just me) has hyperemesis gravidarum!  It’s for real.  Everyone is going to hear about it.  I’m not crazy!

I’ve long known I’m not alone.  While HG isn’t common it does impact about 2% of pregnancies and is increasingly recognized by health care professionals.  In my 4th pregnancy I found information, support, resources, and most importantly, friendship with other women that have or were experiencing HG in their pregnancies through the Hyperemesis Education and Research Foundation HelpHer forums.  With them as my companions, we navigated the choppy waters of HG with more options in our boat.  We learned what questions to ask, The Piano Man became a more confident advocate for me, I admitted how bad I was, and I relaxed about taking medication.  My pregnancies got easier but I’ve never experienced normal morning sickness, just less severe HG.  My care has spanned no intervention except when I would collapse, to occasional IVs, to a PICC and daily hydration, and in one pregnancy a short bit with TPN until I developed sepsis and my line had to be pulled.  All of them required anti-emetics and either hospitalization or home health care.

Some say I was crazy to go through 6 HG pregnancies and maybe I was.  I answer why we continued having babies even with HG here if you’d like to read it but the short version is I didn’t want HG to win, I didn’t want my family planning determined by this condition.  We felt we were missing people in our family and adoption wasn’t an option.  And I’m really, really stubborn.

We have a long, long way to go in understanding Hyperemesis Gravidarum.  I hate that Kate is experiencing this, I hate that anybody would experience it.  The comments on the article about Kate’s pregnancy troubles are a mix of support and nasty.  Hopefully though, Kate’s suffering can do others a world of good by raising awareness and maybe even more research and education of health professionals will result.  I know that  many of my HG sisters in the UK have struggled for appropriate treatment protocols in managing their HG, specifically in needing prescriptions for Zofran.  I hope that an official diagnoses of HG for Kate would lead to a better standard of care for women in the UK suffering from this condition in the future.  In time I believe HG won’t be mocked by the general public and will be accepted as a real condition that deserves real respect and support.  We’ve already made progress.

Even with that progress I’ve heard people, many my own health care providers, say some incredibly hurtful and ignorant things about HG.  Here’s a sample, all of which came from my own health care providers along the way, some as recent as 9 months ago:

If you really wanted this baby you would will yourself to stop vomiting.

It doesn’t count as vomiting if nothing comes up any more. (My OB when I was in the hospital.)

You just need to make yourself eat.

You don’t need fluids yet, you still have tears.  (As I cried in my OB’s office.)

Every pregnancy is different. (This one was a big part of me trying for the “perfect pregnancy.”)

If you come in here and have lost more way I’m going to be so upset with you.

You just need to try harder.

I think there has to be a mental component, why else would you vomit so much?

I don’t understand why your food journal is blank.  (After saying I threw everything up.)

Oh no, we’re not admitting you to L&D, that’s for having babies, you’re going to psych. because there is obviously something going on there with you.

I’ve never met anyone that didn’t experience relief with ginger, it shouldn’t burn if you’re doing it right.

Just some tea and crackers before you get out of bed, you got up to pee first, that’s why you still got sick.

What message are you sending your children with throwing up so much?  I would be worried about that.

Are you sure you’re not anorexic?  I’m ordering a psych eval, you don’t need meds, just help with your head.

There must be some unconfessed sin in your life, confess it and be healed.

Really, you can’t complain, at least you won’t have any weight to lose after the baby.

How could you eat that?  What a terrible choice. (It was a milk shake and the only thing I kept down that day.)

Do you think you are suffering for the sins of your ancestors?  (A midwife, not mine, while I was on the floor vomiting.)

I’m not sure what you expect me to do, you just can’t handle the realities of pregnancy.

I don’t like using medications in pregnancy but I guess it’s better than you dying.  (I didn’t stay with this midwife.)

 

I couldn’t go through with that termination with my 3rd.  My heart wanted that baby even if my care provider didn’t believe me and my body fought it.  Today that baby is 9 years old and an incredible sister to her 5 sisters.  We survived.  Now, as I cry over the princess of England having HG, I feel a part of me healing that I had thought died.

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Pregnancy, breastfeeding, my toddler, and me

My pregnancies suck.  I’m often asked why I keep having children when pregnancy is so difficult for me physically with hyperemesis gravidarum (HG).  Usually my response is something like “because I’m crazy,” or “denial is a powerful thing,” or “I had to believe that next time would be different” and I attempt to laugh it off as just another piece of my crazy.  And maybe that’s exactly what it is.  The truth is, I don’t have a good answer that will help it all make sense, even to myself.  The best and most honest answer is simply that we didn’t feel done and I just couldn’t let HG win.

It gets even more confusing when I go through a difficult pregnancy and continue to breastfeed my current nursling.

At just over 26 months I’m pretty sure Smunchie and I are weaning.  It’s not what I wanted, or at least not what I planned.  I might have wanted it.  When I discovered I was pregnant with Sugarbaby I swore I would not intentionally wean during this pregnancy like I did last time.  No, we were going to stick it out no matter what.  Even if I hated it.

I did.  Hate it, that is.  It wasn’t the fact that my pregnancies are complicated, that I struggle to keep food and liquid in at all, that I end up with IVs and then a PICC line, or even that I feel like I have the most unrelenting case of food poisoning ever.  No, those things actually made me grateful Smunchie was still breastfeeding as it gave me a way to stay connected to her when I couldn’t get off the couch.  At first I was so grateful for breastfeeding and I cherished our cuddling “bobbies” time, because it anchored me a bit, it was only slightly uncomfortable, and I could tell she found it comforting in the midst of all the change we were experiencing with the effects of the pregnancy on our family.  But then it started to get more uncomfortable.  Then it started to hurt.  Then it started to require breathing exercises worthy of labor. Then every time she would latch I would mentally cry “please wean, please wean, please wean…”  I didn’t want to be a martyr, that doesn’t do either of us any good, but I didn’t want to end something that was so important to her plus I had this goal of not leading weaning and letting her self-wean.  And I’m a goal oriented person, I really like meeting my goals.  My experience weaning during my last pregnancy was unpleasant anyway and I deeply regretted it for even selfish reasons.  Mastitis and my HG getting worse made me greatly debate if the point of weaning, which was because I was still 26lbs below my prepregnant weight at the start of the 3rd trimester, would have been better served if we had continued breastfeeding instead.  Squiggle Bug was broken hearted and when she began rejecting me for all forms of comfort once we weaned, I was broken hearted too.  I wasn’t about to let any of that happen this time, no, I would fight for our breastfeeding relationship through this pregnancy.  It was important to me to continue, for both of us.

Pain, discomfort, and being downright miserable are hard to push through though.  To preserve my sanity there were times when I’d limit her feeding sessions, telling her we’d be “all done bobbies” after singing a song or counting to 10.  I’d try not to clench my teeth while she nursed.  Or stick my tongue out at her.  Or make scrunched up torture faces.  Or cry.  It didn’t help that I could tell my supply was dropping quickly.  In previous pregnancies I had been on Reglan to aid in digestion but this time we decided to see if I could go without as the side effect of depression had been difficult on my family.  Without the Reglan providing a boost to my supply, I experienced my milk drying up and the only response I had to galactalogues was to vomit.  I knew that to best prevent drying up I needed to let her nurse more but between her frustration that the milk sometimes just wasn’t there and me being ready to climb the wall every time she latched, I had to have limits on how long she could be at the breast or risk damaging our overall relationship if my frustration really came through.

The handwriting was on the wall.  I resisted but I welcomed it too.  It was confusing to be so conflicted.  The Piano Man didn’t say anything but I could tell he wanted us to wean, wanted the stress and emotional roller coaster about breastfeeding to just end.  Finally, about a month ago, he told me he thought it would be ok if we were done because, well, look at her.  She’s happy, confident, healthy, and almost never asks for it.  He was right, about all of those things.  If I didn’t offer, she didn’t ask, often for days at a time.  She did happily come for cuddles and kisses all the time.  She was still very attached.  Just, without the breast.  I offered right then and she did come over, climb on my lap and latch for a moment.  A brief moment, for just about the time she probably got some let down, then she let go, sat up, patted my breast, and said “tan tou!  All done.”  I think that was for my benefit.

She has breastfed a handful of times since then, most were her request.  I continued to offer but she began to decline more frequently.  She had things to do, games to play, places to explore, “bobbies” just weren’t what they once were.  Two weeks ago she asked to nurse early in the morning in bed.  Excited and kind of squirmy, she latched.  I started my concentrated breathing when suddenly she let go, made a face, and said “blech.  Yucky.  All done.”  I tried to get her to latch again, encouraging her to try but she only pulled my shirt down and repeated “all done.”  Since then she has tried only 2 other times, all brief, and all ending with some kind of disappointment on her part.  Like she remembers what it once was but recognizes that it’s just not that any longer.  I’ve stopped offering, mainly because she was starting to seem upset when I did and usually refused me with a sad “no.”

Once SugarBaby is here I will let Smunchie have the breast if she is interested.  I’m not going to insist or force anything and if she’s moved on then so will I.  Letting go hasn’t been easy but I know that together we’ll share with our newest nursling the joy that is “bobbies.”  My friend Diana Cassar-Uhl, IBCLC, encouraged me that we would find new ways to connect if our breastfeeding journey came to an end now.  She was right and they are equally precious moments.

Not everyone has a difficult time breastfeeding in pregnancy, please don’t think that just because that was my experience it has to be yours.  Every journey with every child is unique, honoring the journey means you take it as it comes.  I’m so grateful Smunchie and I have had what we have had.  I’m grateful for what is to come as well.  Breastfeeding through pregnancy isn’t easy for me but then, pregnancy isn’t easy for me.  This part of our journey was still beautiful and precious though, and I wouldn’t trade it for the world.

My big girls helped me with a little video looking over the recent months of breastfeeding during this pregnancy.  Gathered around the piano for this simple recording I looked over these 5 girls that have each had their turn to be my nursling.  Seeing them, today ages 26 months – 13 years, I couldn’t ask for more, my ordinary miracles.  (Don’t worry, I didn’t include any footage of me vomiting while breastfeeding or Smunchie waiting for me to finish puking so she could latch back on to the breast, just the breastfeeding shots.)

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Why find out?

After sharing my thoughts on the sex of this baby and finding out (Blue hair, ultrasound, 5 girls, and Sugarbaby) I had a lot of questions asking if we don’t care what the sex is, why find out?

I’ve talked before and openly about my pregnancies and having to deal with Hyperemesis Gravidarum (HG) through out them.  To sum it up, HG is severe nausea and vomiting in pregnancy, beyond the normal morning sickness levels, that usually results in a more than 10% weight loss for the mother, poor nutrition, dehydration, and other complications.  It’s like food poisoning that stretches on for months, for me personally it’s looked like vomiting 20-30 times a day and getting down to as low as 83 pounds.  Thanks to aggressive preventative care, this time I’ve only lost 16 pounds and with regular daily fluids through my PICC line, I’ve not dealt with severe dehydration.  At this point (over 20 weeks) I’m doing better than I ever have in one of my pregnancies and am down to vomiting 3-4 times a day and  for the most part I am able to function.

Still, it’s not easy and I have to admit to feeling more like I’m managing an illness than like I’m having a baby.  Because right now, that’s exactly what I’m most focused on, managing an illness.  Sugarbaby moves and kicks a lot and my belly is growing but I feel far more connected to my PICC line than I do the child growing inside of me.  I’ve even considered naming it, the line that is.  I have named my puke bucket in the past, so deep was the connection there.

There are reasons to be concerned about ultrasounds and like many in the natural birth community, I have my reservations about routine ultrasounds in pregnancy.  I’d share links to articles and research on the issue but I’m avoiding them right now since I’m about to go have one.  But do a search, there are plenty out there.

So why would I do an ultrasound if I have concern about their safety in pregnancy?  Aside from the fact that it’s only one ultrasound we plan on having during the entire pregnancy unless medically indicated otherwise, I have my reasons.  In my experience I have seen that a pregnant woman’s mind can greatly influence her pregnancy and her birth.  We have not had ultrasounds with each of our babies, with two we felt there was no medical reason to do so.  But then we discovered something: I struggled more with depression and feeling connected to my baby both during and immediately following the pregnancy when we didn’t find out than when we did.  There comes a point where I need something to help me start knowing the person I’m growing and connecting with them more than I’m connected to my IVs.  Knowing the sex of the individual growing inside of me is like a surge of power between me and my baby, energizing my connection and helping me get excited about having them.  That excitement helps make managing my HG this small challenge along the journey of getting this person.  The tiny potential risk of one ultrasound that gives us that connection as well as the peace of mind that the medications I’m on aren’t causing my baby to grow a second head means lower stress levels, higher endorphins, and begins the emotional journey from “I’m sick” to “we’re having a baby!”

With each of my pregnancies I find I worry more that something is wrong with my baby.  I used to think it was that I know more but now I think it’s not that complex.  We’ve had 5 healthy babies (Smunchie does have a minor heart defect and it was difficult and scary for a few months) and I start thinking there’s no way we’re going to have a 6th healthy baby.  Each time I imagine something worse.  Silly?  Probably.  Very real to me?  Yep.  And so, to help me sleep and to lower my anxiety, silly though it may be, we get the scan.  What if we do have a baby that is going to have special needs?  Well, things will proceed as already planned and we’ll start learning about navigating the world of parenting a child with special needs.  That’s not the problem for me, it’s the not knowing and the imagining that is.  Boy, girl, perfectly healthy, or special needs, this baby is ours and we love it very much, none of that’s going to change.

One more question that I’ve been asked frequently and I know goes unasked even more frequently: why keep having babies when you’re pregnancies are so rough?  The short, easy answer is because I’m crazy.  The longer, more complicated answer is that for me personally, I didn’t want HG to have the say in our family planning.  Our family didn’t feel complete.  We considered adoption and had actually planned on adopting but that didn’t work out.  So here we are.  It has been a difficult decision but one I don’t regret.  Getting through each pregnancy is hell, I won’t lie, and I hate the stress it puts on my family.  But we weren’t done, so we’ve walked through it.  I know it’s not for everyone and I grieve with my HG sisters that want more children but can’t make the HG journey again.  I feel incredibly blessed.

Please, if you or someone you know struggles with vomiting and nausea in pregnancy, please visit helpher.org for information on HG.  While care and treatment of HG is improving, it has long been misunderstood, left undiagnosed, and poorly treated.  Check this list to see if what you’re dealing with is normal morning sickness or HG.

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