Hyperemesis Gravidarum and Ondansetron: a critical response to media coverage

by Kari Swanson

In the interest of full disclosure: I am the survivor of two pregnancies with Hyperemesis Gravidarum during which I was given Zofran and/or ondansetron. Both of my children, currently ages 9 and 4, are developmentally normal, with no health problems attributable to my use of ondansetron.

 

Birth defects from Zofran in pregnancy

A recent headline in the Toronto Star proclaims in bold face “Birth defects blamed on unapproved morning sickness treatment.” The lengthy piece about the drug ondanestron, which is sometimes prescribed off-label to women with Hyperemesis Gravidarum (HG), is written as an exposé of drug companies and physicians gone wrong, the result of which is “vulnerable” pregnant women being prescribed a harmful drug that causes their babies to be born with extraordinary birth defects as a result. This would be horrifying if it was true, of course, but, it’s not. This article is not a scientific article. It is not a scientific literature review. It is pseudo-scientific sensationalism. One might think the goal of such an article would be to protect women and children, but like most pseudo-science involving medicine it presents very real public health risks.

According to the Hyperemesis Education & Research Foundation web site, HG is

“…a severe form of nausea and vomiting in pregnancy. It is generally described as unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids. If severe and/or inadequately treated, it is typically associated with:

  • loss of greater than 5% of pre-pregnancy body weight (usually over 10%)
  • dehydration and production of ketones
  • nutritional deficiencies
  • metabolic imbalances
  • difficulty with daily activities”

HG is not morning sickness. HG is just plain sickness. In my first pregnancy there were many days when I vomited in excess of once an hour. I lived with constant nausea. I vomited before getting out of bed when I woke up in the morning. I vomited in the shower. I vomited on the side of the road while driving to work. I vomited in my flower garden while weeding. I believe my record was 38 times in one day. I vomited so violently and so frequently at one point that tiny blood vessels broke in my face and eyes. It certainly wasn’t the pregnancy glow I had envisioned.

I tried all of the remedies that everyone, including my obstetricians, suggested: crackers, sips of water, lemon, ginger ale, ginger tea, ginger snaps, candied ginger, extra vitamin B, extra sleep. Nothing worked. I lost weight. At 3 months pregnant I weighed about 11% less than I did before my pregnancy. I had several visits to the ER for IV hydration. More than half way through my pregnancy, after an all-night stay in the ER for IV fluids, my OB finally prescribed Zofran. For me it was a miracle drug, because it meant that I was able to keep at least one meal down every day. It didn’t completely eliminate the symptoms, but it did make them much more manageable. When I became pregnant again 5 ½ years later and started vomiting numerous times every day at 5 weeks pregnant I asked for Zofran. I still experienced nausea and vomiting throughout my second pregnancy, but nothing like I experienced the first time. I only required IV hydration in the ER once the second time around.

HG presents serious risks to a woman’s health. Complications of HG include: dehydration, malnutrition, damage to tooth enamel, renal failure, jaundice, ruptured esophagus, and deconditioning of the heart muscle, just to name some. Some of these complications can be and have been fatal. In addition, HG can cause long term health effects. Some women experience PTSD. Others, like me, develop complications of their complications: prolonged dehydration caused me to develop kidney stones.

HG also presents risks to the child. Fetal complications of HG include: premature birth, low birth weight, neural tube defects, and congenital heart defects, among others. Also, according to the Hyperemesis Education & Research Foundation, “…prolonged stress, malnutrition and dehydration in the mother can potentially put an unborn child at risk for chronic disease (e.g. diabetes, heart disease) in later life.” And, HG can also cause fetal or neonatal death.

Clearly Hyperemesis Gravidarum is a serious health condition. It is not something that can be or should be ignored or treated lightly. Women die. Babies die. When considering treatment options, women and their healthcare providers must weigh the benefits and risks of particular treatments. The decision is not about a minor inconvenience. It is very often a matter of mitigating potential harmful or life-threatening effects.

The Toronto Star article cites data recorded in the US Food & Drug Administration (FDA) Adverse Event Reporting System (FAERS). The reporters cite this data as if it presents irrefutable proof that ondanestron is a dangerous drug that caused harmful effects to babies. But, the truth of the matter is it does no such thing. The FDA states on the FAERS site:

FAERS data do have limitations. First, there is no certainty that the reported event (adverse event or medication error) was actually due to the product. FDA does not require that a causal relationship between a product and event be proven, and reports do not always contain enough detail to properly evaluate an event. Further, FDA does not receive reports for every adverse event or medication error that occurs with a product. Many factors can influence whether or not an event will be reported, such as the time a product has been marketed and publicity about an event. Therefore, FAERS data cannot be used to calculate the incidence of an adverse event or medication error in the U.S. population.

Let me reiterate: the FDA does not require that a causal relationship between a product and event be proven. This means that random, purely coincidental health conditions may be reported as side effects of a drug. FAERS data are useful for looking for trends or potential side effects that might have been caused by a drug, but they are not proof that a side effect is caused by a drug. FAERS data should be used for further study. They should not be construed as concrete evidence of a causal relationship.

The use of ondansetron in pregnancy has been studied. The Toronto Star article sites some of the research, but a news article is not a scientific literature review. The reporters do not present the totality of research on the subject, and what they do present is presented in a manner that shows bias in favor of their own assertion: that ondansetron causes birth defects. There are, however, numerous other scientific studies that indicate otherwise. Anyone can easily research the topic for herself (or himself) by utilizing the freely available medical research database PubMed.

Although it has been studied, the use ofondansetron in pregnancy is considered an off-label use. It is unfortunate that the Toronto Star article presents off-label use of medications so negatively. Off-label prescribing is common and sometimes is the best or only treatment option for certain conditions. While it is true that sometimes off-label use of a medication might later be proven (by research) to be of no therapeutic value, or worse: harmful, sometimes off-label use later becomes an FDA approved use after further research supports it. According to WebMD certain beta-blockers once only used for the treatment of high blood pressure and used off-label to treat heart failure later became approved prescription treatments for heart failure.

Despite the fact that use of ondansetron to treat HG is off-label, the prescribing information for Zofran (ondansetron from GlaxoSmithKline) states:

Pregnancy Category B. Reproduction studies have been performed in pregnant rats and rabbits at daily oral doses up to 15 and 30 mg/kg/day, respectively, and have revealed no evidence of impaired fertility or harm to the fetus due to ondansetron.

Pregnancy Category B is defined by the FDA as follows: “Animal reproduction studies have failed to demonstrate a risk to the fetus and there are no adequate and well-controlled studies in pregnant women.”  The safety and categorization of drugs varies from country to country. For example, acetaminophen is US FDA Pregnancy Category C (less safe to use in pregnant women than ondansetron!), but in Australia acetaminophen is Australian Pregnancy Category A, which means Australia considers acetaminophen to be safer for pregnant women than the US FDA does.

Ondansetron is not entirely without risks or side effects.   The FDA, like Health Canada, issued warnings about potential heart risks, specifically a heart rhythm problem called QT prolongation. However, those risks very clearly apply to people with Long QT syndrome, those with underlying cardiac defects, those with low potassium or magnesium, and people taking other medications that can cause QT prolongation. They did not withdraw the drug from the market. Many thousands of people have taken ondansetron with no apparent harm to their hearts.

Furthermore, many women, including those who have not taken ondansetron or any other drug, give birth to babies with birth defects every year. According to the US Centers for Disease Control and Prevention (CDC), “Birth defects occur in about 3% of all live births.” Recent CDC data on the prevalence of birth defects in the US between the years 2004 and 2006 show an estimated prevalence of 4.71 in 10,000 babies born with atrioventricular septal defect, for example. HG is associated with an increased risk for fetal cardiac defects, but women without HG and who have not taken ondansetron also give birth to babies with heart defects. According to the National Heart, Lung and Blood Institute, “doctors often don’t know why congenital heart defects occur.” Leaping to the conclusion that the heart defect of one infant reported in FAERS was caused by ondansetron is wildly inappropriate.

I do not speak for all women who have experienced HG, but I and more than one of my “HG sisters” found the Toronto Star article disturbing. It is sensationalist journalism that has the potential to cause women or their healthcare providers to delay or avoid effective treatment at the risk of their/their patients’ own or their babies’ immediate or long-term health or even at the risk of their lives.

For another look at the safety of odansetron during pregnancy, see this Huffington Post piece breaking down a Danish study of 1,970 births where the drug was used during pregnancy.

 

kariswansonTLBKari Swanson, MLS, is a daughter, sister, wife, mother of two, member of Generation X and an admin for The Leaky [email protected]@b Facebook page. She has been an academic librarian for 15 years. She blogs occasionally over at Thoughts from BookishMama

 

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I don’t know how to tell you about Hyperemesis Gravidarum

by Jessica Martin-WeberHG awareness 2014

Today is Hyperemesis Gravidarum Awareness Day and I don’t know what to say.  I don’t know how to tell you why this matters to me or what HG is like.  Though I’m used to being able to express myself fairly well in written word, for some reason I just can’t find the words.  The truth is, I just don’t know how.  There’s too much and it is still so hard to talk about.

I don’t know how to explain the way HG robs everything wonderful, everything beautiful from pregnancy.

I don’t know how to tell you that though I wanted every one of my babies, I never wanted to be pregnant.

There are no words to describe the guilt I felt and grief I sometimes still have over hating pregnancy.

I don’t know if I can even begin to explain how much I wanted to “just eat” but every time I ate my insides would turn inside out and punish me for hours until there wasn’t even bile left.

Or the courage it takes to admit I wanted to end my pregnancies or my life.

And I don’t know how to tell you that sometimes it was hard to hear about or see happily, glowing pregnant women.

Because I know, I KNOW that even with that I am one of the lucky ones.  I got to have my babies.

I don’t know how to tell you that being told I was lucky I got to be skinny while pregnant or how good I looked made me crumble that people couldn’t see how I was dying, physically and emotionally, on the inside.

I don’t know where to start on the toll HG takes on my family, my husband and my children have suffered under this burned more than I can say.

I don’t know how to explain what it’s like to vomit so much you can’t breathe.

I don’t know how to share with you how the force of vomiting and dry heaving out of control leaves you spent and dizzy and gasping for air.

I don’t know what words to use to paint the picture of never ending nausea and vomiting.

I don’t know the way to make you understand why I stopped counting how many vomiting sessions I had in a day once I reached 24 even if it was only noon.

And I really don’t know how to spell out what that looks like every day all day for 40 weeks.

Because I know, I do KNOW that it could have been so much worse.  I got to have my babies.

I don’t know if it will make sense that I couldn’t eat anything, no matter how hard I tried, not even crackers or ginger or anything else.

I don’t think you’ll want to hear how much I wanted to take said crackers, ginger, or anything else and shove them where the sun don’t shine to the next person attempting to be helpful that suggested I “just” try that.

I don’t know if I can handle sharing how my nurses would try to find a viable vein in my dehydrated body and still fail after a dozen attempts.

I don’t know how to tell you that nobody doubted me having absolutely no control over the HG as much as I did.

I don’t know if I can make it clear how much I felt like a failure every day, every time I vomited, every time I heaved.

I don’t know if blame even touches the contempt I felt for myself when my babies weren’t growing well.

Words fail me when I try to explain the confusion, depression, and physical bleakness that comes with dehydration.  I was almost always dehydrated.

And I don’t know when I’ll stop crying when I confess that I was always afraid of how this was hurting my growing baby.

Because I know, I KNOW so well that in the end it was all ok.  I get to hold my babies.

I don’t know if I can deal with your questions as to why I would continue having babies if my pregnancies were so terrible.

I don’t know why you would want to hear about how I got down to 83 pounds at 5 months pregnant, my skin yellow, my organs failing, and how as much as I wanted to just eat, I couldn’t.

I don’t know if I can keep it together to recount the things people, health care providers, said to me as I fought to get well.

I don’t know what stories to tell, like how my toddlers would pretend to throw up, that I christened every place I visited in my town, or how I would do my job in between vomiting- if I could not pass out long enough.

I don’t know if it will make any sense that I have a love/hate relationship with my PICC scar, a bittersweet reminder of what it took to survive growing my babies.

I don’t know how to describe the taste of bile and then blood on my tongue for weeks at a time.

The gratitude I feel for those that believed me, fought for me, and took risks for me defies adequate expression, I know they save me.

Because I know, trust me, oh how I KNOW that this agony ended well.  I get to hold my babies.

I don’t know the vocabulary required to detail what the caustic stomach juices did to my throat and my teeth and my spirit.

I don’t know how to tell you the fear I still hold that being on the maximum dose of Zofran and the drug cocktail that was poured directly into my veins harmed my babies.

I don’t know if I can voice the even greater fear that organ failure and ketosis was harming them more than the drugs ever could.

I don’t know how to narrate the experience of trying to decide if I should save the life of the mother of my existing children or hope to live through my body shutting down to try to keep growing their little sister.

Or the anxiety I have that my daughters will face the same fate when they begin to have children of their own.

Because I know, please know that I KNOW how blessed I am to even have my children.

But I know this too, more people need to be aware of HG, to help with research, and to help support those families impacted by HG.  I know this.  To learn more about HG please go to helpher.org.

 

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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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Tone, filters, and information

Photo by Bas Silderhuis

Whenever I see articles talking about the importance of nutrition in pregnancy I get a little tense.  When recent articles came out about research findings that moms that eat a diverse diet of healthy foods during pregnancy expose their babies to flavors that can help them to be less picky and eat a wide range of healthy foods later, I had a momentary twinge of guilt.  With articles like that I find myself thinking “I guess I screwed up” and then “actually, they eat pretty darn well, thank you.  They turned out fine.”

I eat like crap when I’m pregnant.

An article like this one about how physical activity during pregnancy gives babies a “head start on heart health” cause me to want to curl up in the fetal position and cry that it must be my fault that Smunchie was born with a heart defect and I’ve probably taken years off her life because I didn’t exercise much during pregnancy.  In fact, I hardly got off the couch.

It’s not easy to hear that what we have done as parents may actually give our children a disadvantage or worse, hurt them.  In fact, it can be darn near crippling or lead us to defensive responses of anger.

Those articles all hit a sore spot for me, the vulnerable spot of the reality of my pregnancies.  With every one of my pregnancies so far I have battled hyperemesis gravidarum.  Due to extreme nausea and vomiting I lose tremendous amounts of weight and usually don’t even get back to my prepregnant weight by birth.  With my worst pregnancy I was down to 83 pounds at 5 months pregnant.  Instead of a diverse diet of healthy foods, I can’t even keep down prenatal vitamins and pick what I will attempt to eat based on how it will come back up.  (FYI, ginger burns like hell and saltines rip up your throat and make it bleed.)  Regular IVs, PICC lines and an impressive drug cocktail closer to a cancer patient’s regime than anything pregnancy related get me through my pregnancies sometimes along with TPN and NG tubes.  Usually with multiple hospitalizations.  Kidney failure, liver problems, gall bladder problems, and permanent heart damage from severe dehydration have all come with having my babies.

This article just about broke my heart and the possibility that my children may experience long term health and behavioral issues as a result of my pregnancies is a tough reality to face.  I hate it.  It makes me angry.  I may even get defensive.

Sometimes all I want is someone to tell me it’s ok, that nutrition really isn’t that important and all that matters is that the baby is growing.  Not to dismiss the suffering of HG but to somehow alleviate my fears that artificial nutrition is really not that bad and that poor diet in pregnancy isn’t going to ruin my children for life.  After all, I want to say, Lactated Ringer’s and TPN (total parenteral nutrition) are specially formulated to be just as good as real food, right?

No, no they’re not and they come with some very real risks.  I really don’t want people to lie to me and more importantly, I don’t want to lie to myself.  It’s not even close to “just as good.”  But it is as good as I can get.

I’ve tried it all.  Eating the “right” foods, avoiding the “wrong” foods, detoxing, homeopathy, gut healing, a variety of testing, cleanses, herbs, chiropractic, acupuncture, positive thinking (can’t convince me I’m not puking though), prayer, supposed miracle drugs and so much more.  Nothing has worked.  Some have made it a little less awful.  Every time I’ve been afraid of what the medications will do to my baby but more afraid of what not being on them would mean for both of us.  It is not what I would choose and I grieve the loss of the pregnancy experience I had hoped to have.  And, I have to admit, sometimes when I hear that someone else has the perfect pregnancy with no problems and never even took a Tylenol I not only get a little jealous (or a lot, as in completely green… again) I may even get defensive even though what they’ve said really has nothing to do with me.

Do those articles set out to make me feel guilty that I barely eat during my pregnancies?  No, they are just sharing information and sometimes aim to encourage and inspire moms.  Do the moms celebrating their beautiful pregnancy experience do so to punch me in the gut and knock me down?  I’m pretty sure they are just excited about their own experience.  Does the fact that I have very little physical activity during the prenatal stage of my mothering make me a bad mom?  I don’t think so but it doesn’t mean I don’t wonder from time to time or that it doesn’t hurt a little when I’m faced with the reality that it really isn’t a good thing and could be putting my children at risk.  Blaming the information though doesn’t help me or make my reality better.  Hiding it, or worse denying it, doesn’t help anyone else either.

But maybe I have an acceptable reason that gets me off the hook?  Maybe because I had no choice and couldn’t move off the couch or do a prenatal work out with my IV I “shouldn’t feel guilty.”  (I thought this blog post from Analytical Armadillo about telling others they shouldn’t feel guilty was interesting.)  Some may say that but just as soon as some try to make me feel better about the reality of my situation, others will tell me I “should’ve tried harder.”  In fact, when I was pregnant with Lolie I had multiple psych evaluations and was told that if I just wanted my baby and if I would make up my mind to stop throwing up I would be able to eat.  If only that had worked.  It was in moments like those that I felt like nobody really heard me and my suffering and that maybe I was a really bad mom and didn’t deserve my children.  Where is that line?  When is the problem real “enough” that it  doesn’t deserve criticism?  And who gets to decide that?

What if I had just decided to be that way though?  What if I didn’t have HG and just had a normal pregnancy with normal pregnancy fatigue and nausea and I didn’t eat well or get off the couch?  I’m sure the harsh criticism would have been significantly more and maybe even deserved.  But what if there were other factors that others couldn’t see?  What if my husband wasn’t supportive of my pregnancy and I struggled with wanting my baby but having no support?  What if depression was already an issue for me and pregnancy changes led to more of a mental and emotional health battle?  What if no longer feeling in control of my body brought flashbacks of my sexual abuse history?  What if I was totally terrified at becoming a mother, giving birth or that if I moved wrong I’d hurt my baby?  What if I didn’t tell anybody what was really going on and instead I let people think I was selfish and lazy?

Harsh criticism only goes so far.  Occasionally it will inspire people to change but usually it inspires people to become defensive.  It’s hard to listen from a defensive position.  Dialogue, information sharing and genuine care, on the other hand, help people explore their own situations and choices honestly.  It is important to remember that the tone with which we share information can make a difference, making it personal towards someone else’s choices rarely is effective.  At the same time, when reading and receiving information readers bring their own baggage and filters to the message.  Remaining objective is incredibly challenging particularly when we live in a world where much of what we see and read is intended to rile us up and get a reaction.  A form of entertainment.  Even fairly objective peer reviewed studies can be reported in the news with headlines that immediately spark controversy and raise emotions that really have nothing to do with the study.  One I linked above reads as though women who love their babies will be doing prenatal work outs, leaving unsaid but certainly implied that not working out indicates a woman does not love her baby.  With tones like that the actual message can be a bit hard to accept.

Yet these caveats should not preclude us from sharing information.  In fact, we have a responsibility to share it.  My training as a midwife required me to learn a lot about prenatal nutrition and the impact it has on pregnancy, child birth and the health of the baby.  It took a while but I got over the urge to write in every margin on prenatal nutrition “but not always…”  Because ultimately that response was about me, not the standard, normal, healthy, low risk pregnancy these texts were talking about.  Over time I even developed sympathy for women dealing with normal nausea and vomiting in pregnancy, able to offer up suggestions that could help with their discomfort that never touched mine.  These days I can also legitimately celebrate with those that have healthy, normal pregnancies, gain weight without problem and enjoy food and I don’t take it personally or feel the need to remind them “not everyone can, you know.”  They’re not making a personal indictment against me and even if they were too, life is too short for me to dwell on that and let it get to me.  I know they legitimately don’t understand.  Frankly, I’m glad they can’t, I wouldn’t wish my pregnancies on anyone.  But I risk isolating myself, winding up in a dark, lonely hole of guilt and anger if I remain defensive towards the information and the people sharing it.

Whether we’re talking pregnancy health, birth choices, breastfeeding, formula feeding, or just about any other subject related to the choices we as parents have to make, sensitivity and recognizing our own filters in the conversation go a long way.  We should still share information, we should still read information and we hopefully do this in a safe community where processing the information can happen through trusting and supportive dialogue.  I hope that by keeping in mind the fact that we do not know everything there is to a person’s back story and why they make the choices they do we can remember to be more sensitive in how we share information.  I hope that by keeping in mind the fact that we all bring our own baggage to any topic we can remember to try not to take information sharing as personal jabs.  It is through these steps that we can support one another and make a difference for others.

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