I breastfed my children for seven total years, and in that time, I wore more V-necks, camisoles, and double-layered t-shirts than you could shake a stick at. I got so sick of what I came to feel like was my uniform. I felt certain that nursing clothes would never be able to go much beyond the bland tops and pants that I had gotten so accustomed to wearing.
Then, a few months ago, in a Facebook group, I met Andrea, the founder of Leche Libre, a clothing line she designed in response to those same feelings of fashion blandness that I had felt! I could not believe what I was seeing. Could these clothes really be for nursing moms? They were so fashionable! Edgy, fun, and punk! And exactly the kind of thing I’d been yearning for in my breastfeeding days.
At a glance, I could think of a ton of different ways to style these dresses and tops. I could wear the dresses with tights and Doc Martens. I could throw on a pair of heels for at the office. I could imagine how perfect the jacket would be in the cool California evenings when the wind blows off the ocean and the Midwest winters when a V-neck is just too cold.
Andrea’s mission was to create a line of edgy nursing clothes that would empower women to breastfeed in public with confidence, and I’d say she nailed it.
Right now, Leche Libre is running a Kickstarter campaign. I am thrilled at the chance to share these gorgeous nursing clothes with you guys, and I’m excited to be able to support a woman-owned, mom-owned business. There are 8 days left in the Kickstarter, so now is the time to get in.
Some points to consider:
This is a mom-owned business. Andrea is building her business from the ground up, so supporting her not only gets you fabulous breastfeeding clothes, it helps another mom.
Leche Libre clothes are ethically made in the US, so you know that women on all sides of the transaction are being supported.
Andrea is teaming up with the Chicago Volunteer Doulas to coordinate donations of Leche Libre garments to teen moms who face the most barriers to breastfeeding, so even if you are no longer nursing, I would encourage you to get in on the Kickstarter to help support these young moms and their babies.
Andrea says, “Instead of thinking, ‘I just had a baby, my social life is over,’ I want women to say, ‘I just had a baby, now let’s go have some fun!’”
I haven’t written much about Hyperemesis Gravidarum in a while. It’s hard for me to write about. It’s hard for me to remember. But I realized recently that even harder than remembering it is living through it, and right now there are women all over the world suffering from HG. So today I’m breaking my silence on HG and doing my part to spread the word about this disease.
For those who don’t know, Hyperemesis Gravidarum is a life threatening form of nausea and vomiting in pregnancy. Some folks might say that it’s like morning sickness, and I guess it is, if morning sickness lasted all day every day for months on end and caused you to vomit so much that it endangered your life. It’s awful. It’s ugly and brutal, and it kills mothers and babies. That’s why it’s important that we talk about it.
I’m a two-time survivor of HG, and you can read about my experience under the Hyperemesis Gravidarum category.
If you’re suffering from HG, you can check out my hyperemesis gravidarum protocol here. It might be useful to print this off to share with your doctor if you’re sick or to make notes for yourself on if you’re planning another pregnancy.
Recently, there’s been some buzz in the news about Zofran and the possibility that it has been linked to birth defects. One of the things I’m happiest to share is this study from UCLA that found no evidence that Zofran causes birth defects. This is huge! Zofran has saved the lives of many women with HG, and maintaining access to life-saving treatments is so important. I’ll share a post later with more about my experience with Zofran, but I thought it was important enough to get this life-saving news out as soon as possible. I didn’t want to wait to tell you all.
HG is terrible, but there are ways you can help.
You can participate in research studies. If you or a relative has had HG, you can check here to see if you qualify for the research UCLA is conducting to find out if there are genetic links with HG sufferers.
More than anything, you can talk about HG. So many mothers suffer in silence. I spent 12 weeks of my first pregnancy covering up how sick I was because I felt guilty for being a wimp about morning sickness. I’d never heard of HG, and learning that I had it and that it was real probably saved my life. Even many doctors don’t recognize HG as being real, so talking about this and spreading the word can save lives.
If you know someone who has HG, reach out to her. This disease is so isolating. Understand that she may not be up to hanging out, but knowing that you’re thinking of her can really help. So can helping with more mundane things like dishes, laundry, babysitting kids so she can rest, and meals for the family.
She may need help getting to the doctor’s office or the pharmacy. Let her know that resources like HelpHer.org are out there. Keep an eye on her and if it seems like the treatment isn’t working, help advocate for her with medical professionals. I remember going into my 2nd round of HG prepared and ready to fight, but when I was in the thick of it, I just didn’t have it in me to correct the random doctors in the hospital who told me there was nothing wrong with me. Even the fiercest woman may need help standing up for herself when she is so desperately ill.
If you have Hyperemesis Gravidarum know that you are not alone.
I see you. I know your struggle. I remember. I stand with you. Please reach out to friends, family, HelpHer, facebook groups, and wherever you can find support. You are not suffering from this because you are weak. You are so, so strong even though it feels like you’re breaking apart at the seams. More than anything, you are not alone.
Here is a link to a fantastic post from Mamas at Work. Cynthia worked hard to research these letters for a friend of hers who was struggling with finding a place to pump at work. The letters included here are fantastic and could help any mom who needs help talking to her employer about finding space to pump at work. She also included a letter for childcare facilities that goes into detail about breastmilk and the USDA food program and babies older than 12 months.
I received an email from Maryanne at the non-profit Mothers’ Milk Bank in San Jose who wondered if I would be interested in posting about non-profit milk banking, and I jumped at the chance! I had a wonderful conversation with Executive Director Pauline Sakamoto about the work that Mothers’ Milk Bank does, and I’m glad to be able support this organization by sharing what I learned.
Mothers’ Milk Bank in San Jose, California is a non-profit, HMBANA (I am having a hard time saying “Hmmbana” for some reason) milk bank. It’s one of many scattered across the US and Canada that collects breast milk from donors to provide to babies and children in need. HMBANA banks set the standard for all milk banks in that they not only receive endorsements from health agencies, but they collect and distribute their milk in a way that adheres to a specific set of best practices.
Pauline explained to me that one of the biggest things that sets HMBANA banks apart is the focus on the breastfeeding relationship. The main goal is to get mom and baby breastfeeding, not ship out a certain volume of milk. Many of the employees at Mothers’ Milk Bank are IBCLCs and RNs, and they work with moms to get them in touch with lactation support specialist in their own area.
I learned so much from speaking to Pauline. I had always been under the impression that milk bank milk was almost impossible to get and that it was only for premies in the NICU. I had assumed that, upon leaving the hospital, moms and babies would be left to fend for themselves.
I was amazed to learn about the diversity of the population that Mothers’ Milk Bank serves! They provide milk to micropremies up to babies 2 and 3 years old! They are even currently providing milk to a 7 year old suffering from spinal-muscular dystrophy. Without his own mother’s milk and the milk provided by the milk bank, this little boy would not be alive today. They also occasionally provide milk to adult cancer patients.
All a person needs to receive milk from the bank is a prescription from a doctor. Many insurance policies cover the cost of the milk, and if not, often employees of the bank chip in to cover the cost of the milk. And what is that cost? Only enough to cover the costs of shipping and processing the milk, usually between $3 and $4.50.
It is often difficult for the bank, though, because demand almost always outpaces supply. The bank focuses on situations where a mom is trying very hard to breastfeed but is not able to due to medical reasons like a double mastectomy or other situation. In other cases, they support the mom’s attempts to breastfeed while providing the donor milk as a supplement to the mom’s actions.
I was also surprised at how easy it is to donate milk. If you can give blood, chances are good that you can also donate milk. Mothers’ Milk Bank covers that cost of shipping and for moms not living in a city with a milk bank, there are often depots set up to receive the milk and help transfer it to the bank. This was surprising to me. I always thought that you had to live in a city with a milk bank in order to donate to the bank. They can even collect milk from Alaska and Hawaii and there are three banks in Canada!
Once they receive the milk, they process it in very small batches. Typically, they will combine milk from 2-4 donors, although sometimes they will note that there is a higher level of bacteria in a particular mom’s milk. If they see that, they pasteurize her milk separately. They work to make sure that the donors in the combined batches all have babies that are of similar age so that they can match the “age” of the milk to the age of the recipient baby. They bottle the milk and treat it in a hot water bath using a method called Holder Pasteurization. They heat the milk to 62.5 degrees C for 30 minutes. Pauline told me that they have found that this method is most effective in killing off bacteria and viruses that may be in the milk while preserving as much of the benefits of the milk as possible.
Once the milk is processed, they ship it out to the patients. It’s that simple.
According to Pauline, the biggest challenge they face is finding enough milk to meet the demand of patients. Because they serve a larger population than just premies in the NICU, they often find that they have more patients than available milk.
When I asked Pauline about mother-to-mother milk sharing, my preferred method of milk sharing, she did not discourage this practice, but she said that no matter what you are doing with your milk, be sure you really know where it is going. She has heard stories of professional atheletes soliciting for breast milk, and one advantage of going through a HMBANA bank is that it gives mom a layer of protection from liability in case a recipient baby does become ill. This definitely made me pause and think. The milk I have given has been to friends, but I wonder how comfortable I would have been donating milk in a more annonymous situation?
The main thing that Pauline wanted to get across is this:
HMBANA has been here for years and years. We all service different people with different needs, and if we could work together and keep in concept that the mission is to help moms breastfeed it would be beneficial. We do need milk. We do need moms to know about us. There are babies behind who we serve and children who are failing to thrive that really need the support. If we had to close down because every mom was breastfeeding, we would do it!
We have excellent moms in the US that are breastfeeding in this country. And bless them for having that extra milk and saying “Can anybody use it?”
Despite the fact that no one else in my family has gotten sick, I strongly suspect that I am recovering from norovirus. I had severe vomiting, dizziness, nausea, stomach cramps, and body aches. Oh, the body aches. Let me tell you! The pain in my legs was indescribable. It felt like my bones were breaking from the inside. All I could do was lay in bed and moan. It was horrible.
I got sick this past Saturday, and now, on Friday, a week later, I am finally able to get back to work. Saturday was the worst day with intense nausea, dizziness, vomiting, body aches, and fever. Sunday, I felt better, but by the night I was sick again. Monday, I wanted very badly to feel better, but… no luck. Tuesday, I thought I was on the mend, but that night I woke up with intense dizziness, nausea, chills, and shakes. Wednesday, we went to the doctors where they tested me for everything from pregnancy to appendicitis. Thursday, I felt weak and tired, but started taking probiotics and had a dramatic improvement. I was finally able to eat food! Friday, I was able to go back to work.
Aside from the illness itself, one of the hardest parts about this illness were the memories it brought up. This was the same season I started getting sick when I was pregnant with Cricket, and remembering the hyperemesis was painful and frightening. I smelled the same smells and felt the same feelings.
I was afraid to eat and drink, and even the taste of the Zofran triggered panic and fear.
It was so awful that I even sent my husband to the pharmacy to pick up a pregnancy test. I spent a day convinced that this was actually HG and that I would never feel well again.
At any rate, I eventually recovered. I credit the probiotics I started yesterday morning for a large part of my recovery.
There isn’t really a moral to this story except that hyperemesis gravidarum never leaves you. Even when the illness goes away, the fear stays.
I finally have to admit to myself that Cricket is a toddler. She’s walking, starting to talk, getting more and more active, and starting to lose her baby rolls and chub. I’ve been mourning this quite a bit. She is my last baby, and while it’s amazing to see her grow, I have a lot of nostalgia for the cuddly baby stage.
These days, cuddles are short and to the point. So is nursing for that matter. Sometimes. And then sometimes nursing takes hours and hours.
That’s right. We’ve entered the land of…
Anyone who has practiced full-term breastfeeding (also known as extended breastfeeding) is going to be able to empathize with me on this.
Toddler nursing can be exasperating. Now is when the acrobatics start. They nurse standing up, upside down, standing on one foot while balance on your leg (Cricket’s
personal favorite). They latch on and off as people walk past and daily activity happens around them. Can you blame them? The world is interesting!
They’ve learned to verbally (or with sign language) ask to nurse* and, like any new exciting skill, they like to practice. A lot. This means that they seem to constantly ask to nurse.
They are also learning to control their environments, which means that some babies (Cricket) may take to trying to open the shirt themselves. Often in public. Or in front of your male boss.
It is absolutely okay to teach nursing manners. In fact, it is critical to do so at this time. Teaching baby to show respect and kindness to Mama helps them to learn respect and kindness for themselves and others. For shirt opening, I immediately either put her down or pass her to her dad. Consistency is key. She is gradually getting better.
Between the ages of 15 and 20 months, they seem to nurse like newborns! Round the clock! This is because they are in the middle of growth spurts, teething, and learning that they are independant people. Is it any wonder they need to come back to Mama so much for reassurance?
“I want to run and play, but I need to make sure you will still be here Mommy. You’re still here, right? That was a fun slide! Wait! Where’s Mommy? Oh, thank goodness. There you are! I still need you, Mommy. Don’t leave without me.”
Toddler nursing is just as wonderful as it is wild. Finally, they can thank us and show appreciation for our hard work. A kiss on the cheek, clapping, words of thanks, and hugs are just a few of the ways toddlers show us that they love us. Those bedtime nursings are still the soft quiet times that they were in the beginning. We still get to watch those big eyes slowly close in sleep. The magic is still there.
Like everything else, toddler nursing is a stage. The hard parts and easy parts and parts that you want to remember forever.
We are in the autumn of our breastfeeding relationship now, and every cuddle and every nursing is precious and fleeting.
*Let me be very clear for the “When they can ask for it, it’s time to stop” crowd: Babies ask to nurse from the moment they are born. We just don’t always understand their language. Believing that they should stop nursing when they finally learn our language is like telling an adult that he can’t have sushi anymore because he learned Japanese.
Liz is taking a leave of absence from public education to care for her 18 month old and emotionally needy border collie. Before Liz stayed home, she taught every grade from Kindergarten to 8th, but loved middle school because that is where the real changes in life happen. When she was working, her husband cared for their daughter and then he worked afternoons and nights. Being a mom to her daughter is the best job she has ever had.
I thought having a baby would be easy, like having another dog. I know, don’t laugh at me. I assumed I would feed it and it would sleep, or that I would be able to sit and write while my baby would play on the floor by my feet. Ha Ha Ha. Right now I have to decide if I take this moment of peace while she plays with her shoes to pee or start writing this blog. write while my baby would play on the floor by my feet. Ha Ha Ha.
Right now I have to decide if I take this moment of peace while she plays with her shoes to pee or start writing this blog. Keep in mind that I went back to work at 8 weeks, but I definitely did not have any idea of how much a baby would need me, it’s mother.
The purpose of this blog is not to scare people, but to tell the honest truth so people can have some idea of what they are getting into so they can schedule their lives. My husband always jokes, “You mean it’s not as simple as the new parenting videos make it out to be?”
In the beginning:
A few months before my baby was born, a friend told me that nursing was a part time job. I didn’t really believe it. But no, she is right. A new baby needs to nurse every two to three hours, and sometimes will want more, especially during growth spurts, every four, six and eight weeks. A new baby nurses 10-12 times a day; this is important because it establishes milk supply. During this time I watched a lot of Gilmore Girls. Some people read. Learning to sideways nurse helped a lot because then I could sort of sleep.
The first eight weeks are hard, very hard for someone who isn’t used to sitting down. I had to tell myself that the time would pass and it sure did. It seems like only yesterday I was holding her on a breastfeeding pillow.
A new baby wants to be held, a lot. I assumed that I would nurse the baby and put it to sleep in it’s bed. I learned that that moment between sleep and awake is a fragile moment to a baby, and that they cry. A lot.
I also learned that the best way to maintain my sanity was to wear her on me in either a sling or a wrap; my Moby Wrap and I became great friends because I could have my hands free.
We also danced a lot and bounced on a yoga ball because babies have gas, lots of it. The first eight weeks we nursed, I burped her after each feeding, sometimes we nursed again, we went for walks with her in the Moby, I tried to nap during the day as I was used to getting more than five hours of sleep at a time (a record for new moms actually), she would fall asleep on me or in the Moby and I would have a few moments to relax before it all started up again.
Motherhood is hard. No one tells you that. Sometimes we assume that they will be like little dolls that we can just give a bottle or pacifier and all will be alright. That’s certainly a fantasy world. My child had no interest in a pacifier, which turned out to be a good thing because now I don’t have to figure out how to take it away from her.
Now I went back to work at 8 weeks and I pumped at work. When I came home I still had all the usual chores like shopping, laundry, pulling weeds, cooking and cleaning etc. For getting these things done, I found my Ergo and sling to be indispensable because I could wear her and be close to her and not feel like I was away from her too much. Every day when I got home if it was still light out, I either put her in the Moby or Ergo and we walked, my favorite part of the day. She was happiest when she was involved and up close by me because I could talk to her, sing to her, and she could look at me and feel me.
When she got older and could sit up on her own, I put her in our Bob stroller and we went for longer walks. Of course I also brought a carrier and kept it underneath after learning that pushing a stroller and holding a sad baby is not a fun thing to do.
When she was nine months old I took some time off work, but that month my baby, who crawled at six months, started walking. Before she was born, I assumed there would be so much down time, time to do other things like I used to always. I didn’t count on all the time it takes to dress a baby, comfort and nurse a baby, bathe a baby, and then when baby was eating food, clean up the food that ended up on the ground and in baby’s hair etc. What I’m getting at is that life is different. So different. But so good! I wouldn’t trade a moment of this because watching her grow is the most fascinating thing I have ever seen.
The great thing about babies is that they are portable and travel well. When she was 4 months, we took her to Washington DC and the Smithsonian. From 10 days to 9 months, she spent quite a lot of time traveling to San Diego to visit family and also went camping a few times. At 10-11 months, we took a three week road trip up to Washington. A few weeks shy of her first birthday, we went to Hawaii. Since then she has been camping in Sequoia and has also flown to Michigan. Having a baby changes life, but she’s just a little person who can enjoy the adventure, too.
In the time that I wrote this blog (a little over an hour), I have also stopped my now 18 month old from taking my books off the shelf, have read her a book about South African animals (she picked it!), taken out the ice packs from the freezer because she wanted them (I don’t know why), watched her climb in and out of our Bob stroller and play with the buckle while putting on and off a hat and putting a hat on a ratty dog toy. She has worked on a puzzle, gotten frustrated with the puzzle and crawled on my lap because she wanted to type. I have taken her to sit on the potty and we read her farm book four times. I just left her in her room after we played with her farm animals for a minute, but now I hear her taking out her books. Things change a lot between 8 weeks and 18 months. Now excuse me, I’m being handed a Dr. Seuss book. Time for me to exercise my oscar winning actress skills on my rendition of Oh the Things You Can Think.
I’m pleased to bring you a guest post from Amanda, a UK hyperemesis gravidarum survivor and a fellow mommy blogger. Amanda suffered from undiagnosed Hyperemesis Gravidarum during her first pregnancy in 2011, and had to fight until 21 weeks to get treatment for it. This, alongside other complications, has left her and her whole family terrified of another pregnancy, despite the desire for a larger family. Her experience has made her passionate about raising awareness of HG and she writes about it regularly on her own blog, The Family Patch, as well as supporting the work of Pregnancy Sickness Support, the UK’s only national charity dedicated to raising awareness of Hyperemesis Gravidarum.
She is also currently writing a book on Hyperemesis, based heavily on research and the personal accounts of women who have suffered from HG in the UK.
With the recent news about the Duchess of Cambridge, Kate Middleton, being diagnosed with and treated for Hyperemesis Gravidarum, the condition seems to have received a much needed boost of media coverage.
And so many of us in the HG community have been wondering what treatment she is getting, which may be easier for us in the UK than those of you in the US, as our healthcare systems differ in some rather large ways when it comes to this. Something I know from experience…
During my own pregnancy the majority of the information I found was from the US and some of it just didn’t relate to my experience over here. And yet, it was a US blogger (the wonderful owner of this blog) who listened to my plea when at 20 weeks I was still being refused treatment and then told me to get right back to the doctors and get the medication I needed.
Despite the differences in our healthcare systems, the experience of Hyperemesis Gravidarum is the same no matter where you are in the world. We all feel for poor Kate, just as we all feel compassion and empathy for any single woman we hear of who is facing the hell of a Hyperemesis pregnancy. It is a universal thing, and something that brings us all together as a community.
And yet, without an understanding of the ways in which our treatment options differ, it can be challenging to offer support and share the information and knowledge we may have. So let’s look at some of the major differences…
First of all, healthcare is free in the UK to anyone and everyone. The National Health Service (NHS) offers the opportunity to see a doctor (General Practitioner or GP) or midwife whenever you need it, free of charge.
This is something we often do not appreciate enough. We are very lucky in this respect, but it does sometimes have its downsides, including the fact that you can often see a different GP every time you visit your GP surgery (what we call the doctor’s office). Within the first 20 weeks of my pregnancy I saw five different GPs.
There are, of course, some real perks to free healthcare, including free prescriptions during pregnancy. Which means once prescribed anti-emetics, there is no paying for them. But it does mean that some women struggle to get prescriptions for the more expensive medications, if the GP decides a cheaper drug is a better option (even if this has proven to be less effective).
And then there is the fact that IV hydration at home is just not a possibilityhere in the UK. I have heard of a couple of women with severe cases of HG being treated at home, but generally it is not an option. The NHS just does not have the means to do this. So any woman needing IV hydration must travel to her nearest hospital with with the facility to do this and, usually, be admitted for an overnight stay. Although, having said this, some hospitals are starting to offer day-admissions.
We also do not have Zofran pumps here in the UK, which I know are relatively common in the US. In fact, we even have a different name for Zofran – here it is called Ondansetron. It took me a long time to make that connection when switching between US and UK support groups!
I’m sure there are other differences I may have missed, but these seem like the big ones. I hope it has helped shed some light on the way HG is treated in the UK, and the fact that despite these differences, often it is the struggle to get recognition of the severity of our sickness and the treatment we need that is universal and gives us far more in common than separates us.
I think most of us in the hyperemesis gravidarum community are thankful for the attention that HG has been receiving lately. We’re finally seeing some recognition for the terrible physical hardships we endured bringing out babies into the world. One thing that we haven’t seen much of, though, is coverage of the emotional toll HG takes.
HG is a traumatic experience that leaves many of us changed forever. I posted recently on my Facebook page about this and got some heartbreaking responses:
It left me feeling depressed, and hopeless. I felt cheated out of a “normal” pregnancy experience. After my second pregnancy it has also left me terrified to have another child. – KH
Torn between wanting to carry my babies to term and wanting to terminate. Fear of ever getting pregnant again. Fear of vomiting in general. Lingering food and smell aversions. Scared of sex, what it protection fails? – JF
Depression. Hopelessness. Anger. Scared I wouldn’t make it the whole way through. I felt thoroughly misunderstood. Nobody understood what I was going through. I felt so alone. – RR
Major emotional depression from being in such a dysfunctional and debilitated state with little to no empathetic support. That totally did my head in and I struggled to find my strength for life after that. – BS
For myself, the HG caused depression, which was made worse by some of the medication. When I started contemplating suicide in my first pregnancy, an alert home healthcare nurse stepped in and had my doctor stop the prescription of Reglan. Turns out a side effect of that medication is suicidal ideation, and I had been taking it at its maximum dose via a subcutaneous drip. No wonder I was experiencing those horrible side effects!
I thought the depression was mostly related to the Reglan, but I was not surprised to experience it again during my second pregnancy. The sense of isolation and despair can become almost unbearable. Yes, many of us are on bedrest, but perusing articles on bedrest survival and an HG survivor will quickly shake her had and dismiss the advice. Much of the bedrest advice revolves around boredom: read parenting books, start a scrapbook, order baby gear online, chat with other moms on bedrest. Those things are impossible for many HG sufferers. For most of us, we spend our days and nights curled up, eyes shut, trying desperately to will ourselves not to throw up. It is an inescapable hell that is difficult to comprehend or explain. Is it any wonder that so many HG sufferers become depressed?
The deep sense of isolation is far and away the most painful part of HG. Knowing that many people can’t relate and fearing harsh words, many HG sufferers retreat from friends and family members. Even many doctors minimize the suffering caused by HG. A few days after being admitted to the hospital for the umpteenth time during my 2nd pregnancy because my ketones were off the charts and I had begun hallucinating, the on-call doctor told me that there was nothing wrong with me. Is it any wonder we hide?
The trauma we experience during HG can lead to life-long anxiety. HG survivors experience post traumatic stress disorder, emetophobia (fear of nausea and vomiting), postpartum depression, and a whole host of long-lasting emotional problems. Some of us, myself included, develop anxiety around hospitals, needles, and medical procedures. Many of us feel angry and cheated for not having the glowing pregnancy that other women get to experience. This anger and anxiety comes up each time we hear news organizations referring to hyperemesis as “Extreme Morning Sickness.”
Please call hyperemesis gravidarum what it is. If it’s hard to say, you can just call it HG. The next time you speak to an HG sufferer or survivor, validate her struggle. Express sympathy for what she went through and may still be experiencing. Most of all, please understand that hyperemesis is a real and terrible disease that can have a lasting impact on survivors both physically and emotionally.
Since the news yesterday about Kate Middleton and her hospitalization due to hyperemesis gravidarum (HG), I’ve seen a pretty significant bump in traffic (mostly thanks to an Inquisitr article about hyperemesis), and since many of my new visitors may not be completely familiar with hyperemesis, I thought it might be a good idea to give a brief overview on what HG is, what it isn’t, and how you can help those who suffer with this illness.
What is hyperemesis gravidarum (HG)?
You’ve probably seen many news outlets referring to Kate’s illness as extreme morning sickness or even just plain morning sickness. While morning sickness is related to HG, the two are not the same. Morning sickness is often a normal part of pregnancy and can be handled with home remedies, fresh air, and occasionally small amounts of medication. HG at its most basic certainly is an extreme form of morning sickness in the same sense that measles is an extreme form of a skin rash. For HG sufferers, the vomiting and nausea is so severe that we can lose 10% or more of our body weight, become severely dehydrated and malnourished, and even miscarry or lose our own lives. For some HG sufferers, the danger becomes so great that they are forced to terminate very much wanted and planned for pregnancies.
Unlike morning sickness, HG often doesn’t respond at all to home remedies, and even common morning sickness medications cannot control the illness. In order to combat the illness, many HG sufferers are placed on 24 hour IV fluid drip either through the traditional IV lines that are placed in the arms or through more permanent PICC lines or other forms of central lines that are placed in the big veins around the heart or through the jugular vein in the neck. We often have to receive our medications through either these lines or through a pump that delivers the medication below our skin at sites placed in our abdomens or upper legs.
HG sufferers often find themselves on a variety of medications, what we call our HG cocktail, to combat the different aspects of the illness. Medications like Reglan move food more quickly out of the stomach so it can’t be thrown up as easily. Zofran, in high enough doses, blocks the body from vomiting. Drugs like Nexium combat the persistent reflux that causes food to almost spill from our stomachs as we move, bend, or roll over in bed. Meclazine or Benadryl (sometimes both together) help fend off the nausea.
In addition to the physical illness, many HG sufferers find themselves becoming severely depressed and isolated. Because many people don’t understand the differences between HG and morning sickness, HG sufferers may withdraw from relationships to protect themselves from people who do not understand the illness and attempt to help by offering platitudes, home remedy ideas, or even scoldings and harsh words. Some HG sufferers become suicidal either as a result of the severe depression and isolation caused by the illness or as a side effect of the medication (Reglan). Sometimes HG sufferers experience hallucinations and other extreme mental disturbances as a result of becoming so severely dehydrated and malnourished.
How long does it last?
Unlike traditional morning sickness, HG often lasts through most, if not all of the pregnancy. While many doctors promise a swift end to the illness at around 12 weeks, many HG sufferers find that the nausea and vomiting is actually at its worst during this time. This can be a terrible emotional blow to a woman holding on that 12 week mark as the end date to the suffering.
While some HG sufferers vomit constantly for the entire 9 months, many do find some relief during their 2nd trimester. The HG never truly goes away, but for a time, the vomiting and nausea can reduce somewhat or even cease altogether.
Following the period of respite in the 2nd trimester, most HG sufferers experience what is referred to as the Third Trimester Relapse. During this period, the nausea and vomiting return, but in some cases the physical changes of the woman’s body means that the 1st trimester HG cocktail may not work. She may need to work with her doctor to find a new combination of medications to combat the illness.
Typically, once the HG sufferer gives birth and no longer carries the placenta, the HG disappears.
Are there any lasting effects of hyperemesis?
HG can have effects that last long after the birth of the baby. The severe vomiting can cause tooth decay and other dental issues. Depression and PTSD are common in HG survivors. Many continue to have food aversions long after the HG has left them. For a very unlucky few, the vomiting and nausea continues for some time after the birth of their baby. A small number of women even have trouble breastfeeding because the oxytocin rush causes them to feel nauseated. Most HG survivors develop some degree of emetophobia, fear of nausea and vomiting.
What can I do to help?
Do you know of someone with HG or someone with really bad morning sickness that just won’t go away that you think might be a form of HG? Here are some dos and don’ts to help them.
Call her. Ask if how she is doing and really listen. Isolation is a truly painful part of HG and knowing that your friends are thinking of you helps immensely.
Ask if you go for a visit, but instruct her that she is to stay in bed and not get up. If she’s not up for much talking, you can help with some light cleaning. A quick turn around the house with the vacuum, taking the trash out, and washing the dishes can be immensely helpful.
She may be embarrassed about the state of her bathroom, but a clean toilet is much nicer to puke into. If you clean the toilet with baking soda, you won’t have to worry about the smell of the cleaner making her sick. Run a load of laundry (including folding and putting away) with an unscented soap like Charlie’s Soap or Rockin’ Green Unscented. Trust me when I say that the smell of the unscented Tide and All detergents can be a major trigger. Change her sheets for her. She’s spending all day in bed, and having clean sheets is a luxury.
Offer to bring meals for the family, but please keep in mind that food smells can cause the vomiting to worsen. Bringing foods that don’t require cooking like a nice chef salad or other low-scent meal would be thoughtful. You can also offer to run a few errands for her like a quick trip to the grocery store (might want to talk food needs with her spouse because the mere mention of food can often trigger vomiting), the pharmacy to pick up her meds, or some place like WalMart or Target to get some household basics like paper towels and toilet paper.
If she has kids, offer to take them to the park, the zoo, or on a playdate on a regular basis. Knowing that her children are having fun with a friend can help ease much of the tension, depression, and guilt she is feeling over not being able to care for them during her illness.
When you talk to her, validate her feelings even if they do sound incredibly negative. Offer a sympathetic ear. Provide her with information about the illness including links to websites like www.helpher.org. If you are close enough, offer to go with her to a doctor’s appointment to help advocate for her. It’s hard to advocate for yourself when you are weak from malnutrition and dehydration. Many doctors and nurses do not take HG seriously, and for that reason, having a strong advocate at her side is a must.
Give her a link to the hyperemesis gravidarum protocol section of my blog. Having an example of what one HG survivor did to combat the illness can help her and her spouse advocate for proper treatment.
Please don’t ask her if she has tried ginger, nibbling crackers, eating very small meals, or any other home remedy. If home remedies worked, HG sufferers wouldn’t have to spend thousands of dollars on medication and treatments. Please don’t tell her that a little fresh air and sunshine is what she needs. Outside air often has smells that trigger vomiting and light can be a trigger, too.
Please don’t attempt to relate to her by telling her about your morning sickness. She would kill for regular morning sickness right now, and hearing about other pregnant women without HG adds to her sense of isolation. Please don’t suggest that the HG is caused by anxiety, depression, doubt about becoming a mother, or lack of love for her unborn child. HG isn’t a psychological illness. Though HG causes many psychological issues, the illness itself is very real and very physical.
When you visit, please don’t wear perfumes or scented lotions. Those kinds of things can be a major trigger for the vomiting. Just before visiting, please also don’t eat very smelly foods like garlic bread, onion rings, or other items that she might smell with her hyper-sensitive nose.
Please don’t talk about or mention food. Conversely, if she asks you to bring something strange like a McDonald’s cheeseburger or a taco bell bean burrito, don’t chide her for eating fast food. For many HG sufferers, this is the only kind of food that will stay down.
Please don’t express concern over whether the medications she is taking are safe for the baby. She is under the care of her physician, and they have determined that the risks of not taking the medications (which can include death) outweigh the risks to the baby. Most HG medicines are perfectly safe during pregnancy, but many HG sufferers still feel incredible amounts of guilt over taking any kind of medication. Please don’t add to that guilt.
More ways to help…
If you aren’t directly in contact with and HG sufferer, you can donate to www.helpher.org to help support research about HG.
Spread the word. HG often goes unrecognized by many doctors, nurses, and lay people. Talk about it with them. Keep the conversation going. The more we spread the word about HG, the fewer women will have to suffer alone, in silence, and without treatment.
I hope this has been informative to you. Do you know someone who has gone through HG? What are some ideas you have on ways you can help them? Have you gone through HG? Tell us about your experience. What was helpful? What was not?