Guest Post: Hyperemesis Gravidarum Across the Pond

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 possibility here 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.

The Emotional Toll of Hyperemesis Gravidarum

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.

Hyperemesis 101: What it is and how you can help

The British royal family on Buckingham Palace ...
The British royal family on Buckingham Palace balcony after Prince William and Kate Middleton were married. Kate wears a wedding gown by Sarah Burton. (Photo credit: Wikipedia)

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.

Do…

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.

Dont…

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?