Hyperemesis Gravidarum (HG) Awareness Month

The month of May is Hyperemesis Gravidarum Awareness Month.  While up to 3% of pregnant individuals will experience HG those who do often suffer immensely. Many will require IV fluids for dehydration and others will require hospitalization and alternative means of acquiring the necessary nutrition to support their own health and that of their baby.

If you or a loved one have been personally affected by HG, know that our hearts are with you. There are others who stand beside you.  There are avenues to explore for support.

This is Kyleen’s Story

---

My older son had just turned three at the time.  He touched my tummy and said, “Mom, you have my baby sister in there!”  I laughed it off and figured it was just because we’d visited with a friend and her baby girl that morning. I went about my morning, but as the day went on it kept nagging at me.

There was no way, but I couldn’t get that feeling and my son’s words out of my head. I caved and took a mid-afternoon pregnancy test.

Imagine my shock when the plus sign appeared in an instant.  

If I had waited even one week, I wouldn’t have needed the test.  I was full-blown in the middle of the worst morning sickness imaginable.

Six weeks into my pregnancy with my daughter, I was a wreck.  

I couldn’t open my eyes or stand up too quickly without getting violently ill.  My weight was dropping, and I’d given up on trying to keep food down. My doctor seemed to understand that it was pretty bad and prescribed some medications, but was otherwise dismissive of my concerns.

The trips to the ER for fluids were frustrating because the nurses would pump me full of fluids and Zofran and Phenergan and assure me that this would all be over by the end of my first trimester.

They minimized what I was going through, even when my labs came back showing signs of malnutrition and dehydration.  

When I became unable to do much of anything without vomiting or passing out, we got a standing order at the infusion clinic set up.  I saw on my chart that I was diagnosed with “Hyperemesis Gravidarum” to get insurance approval.  They denied home health care and a Zofran pump (which would have been cheaper), but the ability to go to the clinic instead of the ER was a huge relief.

I reached out for support where I could find it and discovered a message board on-line, full of other women struggling with HG.  Their words were like a beacon of hope for me – Not because they were getting better, and some of them were having babies, but because I wasn’t crazy.

I wasn’t alone.  

I was able to read their stories and share my own.  There was a space I could vent about how miserable I felt. They knew what it was like to have three veins blow in a week and the judgments of others who just assumed we were lazy, weak or exaggerating.

This message board spoke of an organization called Beyond Morning Sickness and encouraged me to reach out to them.

HelpHER.org and BeyondMorningSickness.com became my lifelines. They connected me with local resources, and sent me books about HG (one for me, and one for my kids).

My husband was driving me across town 3-5 times a week for fluids and IV medications at the clinic.  

By my 13th week of pregnancy, I was going to the infusion clinic almost every day. It was taking 5-10 attempts to get the IV placed.

At my next visit, my nurse asked about a PICC line and wondered why my doctors hadn’t hospitalized me yet.  In spite of the infusions, my labs were coming back worse and worse.   was still losing weight. My blood pressure was lucky to be “up” to 88/54.

On the way home from the clinic one afternoon, I passed out.  My husband pulled over at a fire station, and I woke up to 3 or 4 men working over me as I lay reclined in the passenger’s seat of the car.  They pricked my finger to test my blood sugar levels. 42. I’d just had 3L of fluids, one bag was saline, and the other two were glucose.

My blood pressure was also low, and my heart rate was high. They took me via ambulance to the hospital for more fluids.  The paramedics couldn’t get an IV placed because my veins were so shot, and I remember praying that they’d just admit me when I got there. They didn’t. I got a bag of fluids, some more IV Zofran, and was discharged.

It was that night that I considered termination.  I couldn’t care for my children. I was living in the infusion clinic or emergency rooms. My husband was missing so much work and was in danger of losing his job.  I just needed it to be over.

My husband went with me to my next OB appointment and told my doctor that I needed to be admitted to the hospital.  She rolled her eyes a little and basically said “Well, if you think that’s what you want then fine.  I guess I can write an order and have you admitted.”  By that point, I was crying because I didn’t want to be admitted!

I wanted to be better and be home with my kids.  

When I was admitted, it was impossible to find a vein, even with the special vascular team there to do it.

They called in a PICC team and placed a PICC line, saying that it should have been done weeks ago because even the veins in my upper arms were gone.

They immediately began pumping me full of fluids and medications. Once my labs came back, they added all kinds of other vitamins.  

Somewhere around days 3-5 in the hospital they recommended termination. They’d “tried everything” and I wasn’t getting better.  My labs were coming back worse, and I still wasn’t holding in any food.

They did an ultrasound to confirm the age of the baby and make sure the baby was growing properly despite the malnutrition. At 16 weeks she was the perfect size for her age, and you’d never know there was such a fight going on on the outside.

I stared blankly at the ultrasound monitor, unable to feel even the tiniest bit of connection to this baby.  I wanted to feel connected.  It would make the fight easier.

Around day seven a doctor came in and asked if we’d tried TPN (total parenteral nutrition is basically a thick liquid “food” that’s fed directly into the bloodstream) and steroids.  I said no.  He decided we needed to try those next.

A few hours later as I received the second IV dose of steroids, I felt human.  I could feel.  Days eight and nine I tried eating, and I could keep some things down for longer, but they wouldn’t discharge me until I’d kept food down for a day.  That day came on day 10 or 11, and I got to go home on my normal med cocktail and a steroid taper.  I had hope.  After months of being unable to eat or drink anything, we had made it.

We hadn’t made it.  

The steroid wore off, and I was right back where we started.  Thankfully we’d worked it out that I could keep my PICC line when I was discharged as long as I went to the infusion clinic once a week to have it cleaned and redressed.

The stay in the hospital really did help me get ahead of the HG some.  It seemed like my body could better handle the constant sickness after those two weeks – I still got sick a lot, but I didn’t appear to be as dehydrated overall.  The regular infusions really made me feel a lot better, and I’d go out after them and eat a real meal.  I could keep food in as long as it was within the first few hours after my infusions.

Eventually, my PICC line became infected, and it traveled into my bloodstream.  They had to pull the line out.

Because I had so much anxiety over needles at that point, I only went back to the infusion clinic a handful of times once the line was pulled.

The HG would seem to recede for a while, but then it would come back full force.  I’d get weeks of relief (and hope), just to have it return for weeks.  All of the nutritional deficiencies caused some other issues in my pregnancy. My water started leaking early. I was dilating and effacing early (with and without contractions).  My heart was very unstable and required medication.  I was sick up until I delivered her.  It took over a year for my kidneys and liver to return to normal functioning.

But in the end, it was all worth it.  

I know everyone says it, but it’s true.  The things that matter most are the ones you fight the hardest for, and I FOUGHT for this girl.  We survived it together.

In the midst of the turmoil and chaos, there were countless blessings.  Friends and family stepped up in HUGE ways to support my family. We had more than one person buy groceries and stock our pantry. While others took up donations to pay our bills.

The boys lived at a friend’s house for a week while I was in the hospital. She drove them for over an hour to be able to spend time with me while I was there.  I cannot begin to describe the blessings that overwhelmed our family when we needed them most.

We felt how much we were loved the whole time. That support pushed us through even when we wanted to give up.

When I look at my daughter, it’s easy to think how close we came to losing each other.  They told me we were going to die. – Either she died, or we both would.  They had done everything they could.  But we’re both here.  My feisty, affectionate, hilarious, strong girl made it.  We made it together, and I can’t imagine my life without her.

 

---

For more information on Hyperemesis Gravidarum visit: www.helpher.org

Beyond Morning Sickness is the book that finally put a name to my illness, gave me hope, and made me realize that I was not alone.  I recommend this book to survivors, partners and family members, and medical professionals who work with pregnant women.  This resource is invaluable.

If you need a way to talk to your children about HG, this book touched my family.  I watched in tears as my husband read it to our boys, crying himself.  Written by a survivor in a way that children can understand, it actually touches on what life is like with HG.  Mama Has Hyperemesis Gravidarum (But Only For A While)