May 15th is Hyperemesis Gravidarum Awareness Day. While up to 3% of pregnant women will experience HG those who do often suffer immensely. Many will require IV fluids 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.
I was tired. Nauseous. I’d also been having headaches. But it was too early to have those symptoms if I was pregnant. My monthly reminder had come back just a few weeks earlier. My youngest was only a little over a year and still nursing around the clock. 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. I knew right then I was pregnant with my daughter. There was no need for a second (third, or tenth) test like I did with my previous babies. I knew I felt it.
I thought back to my other pregnancies. I’d had really awful morning sickness with my oldest, too. With my first pregnancy, I dismissed it as terrible morning sickness, and even though it lasted well through my second trimester, I figured this was normal.
Severe morning sickness for sure, but I didn’t know there was another word for it.
There were many trips to the ER for fluids, lots of vomiting, and drastic weight loss with him. I was on medications to help, but I could smell things a mile away, and it would make me sick. So I spent a lot of time in bed with the curtains drawn. Aside from the sickness and preterm contractions with him, I had a healthy pregnancy.
My second pregnancy had other complications, but I was grateful to have “just normal morning sickness” with him.
It was like what the books described. Waves of nausea in the morning, sometimes in the afternoon, or if I let my stomach get too empty. I got sick a few times here or there, but it was night and day difference from my first.
Six weeks into my pregnancy with my daughter, I was a wreck.
I had two young boys to care for, a husband with a new job, and 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. A sip of water was enough of a challenge. 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.
I was soon unable to do much of anything without vomiting or passing out, and finally, 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, about my racing heart and bleeding throat. 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 or weak or exaggerating.
When my husband started getting warnings at work, and the bills were rolling in from medical expenses and living expenses that we couldn’t afford to pay, they knew all too well what a financial toll this illness could take because many of them had been there themselves. My husband was taking off too much time from work to care for our children and drive me to appointments. Our paychecks were short, and he was at risk of being fired.
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 because when I did contact them, it was another ray of hope in the darkest time of my life. They connected me with local resources, sent me books about HG (one for me, and one for my kids), sent me encouraging cards in the mail, and checked in on me from time to time. They even paid our internet bill (which we were going to let go as an “unnecessary” expense) because they didn’t want me to lose my one connection to the outside world, and to a community that understood.
It seemed like too many medications just to be able to keep in a cup of juice on a good day. My husband was driving me across town 3-5 times a week for fluids and IV medications at the clinic. I looked forward to those trips at first. The nurses were amazing and compassionate and knew what HG was. They had treated other expectant moms with the same condition.
They were patient and kind as vein after vein collapsed and infiltrated.
By my 13th week of pregnancy, I was going almost every day, and it was taking 5-10 attempts to get the IV placed. I was in an overflow room with a chemo patient at one visit, and she felt so bad for me. She saw my pincushion arms and legs and asked why they hadn’t put in a port (while patting the one on her own chest). She said she had seen me in there as much as her, and it was inhuman to be forced to be stabbed with needles so many times.
I remember thinking it ironic that we were on many of the same medications, and she pitied me. At the following visit, my nurse asked about a PICC line and wondered why my doctors hadn’t hospitalized me yet. Even with so many trips to the clinic per week, my labs were coming back worse and worse. I was still losing weight. My blood pressure was lucky to be “up” to 88/54.
I remember being amazed that my body could get 3 big bags of fluid and still not have to pee. I peed once every other day, maybe. But all that fluid – Where was it going? I was not getting better; I was still getting worse.
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 laid reclined in the passenger’s seat of the car. They pricked my finger to test my blood sugar levels. 42. Could that be right? I’d just had 3L of fluids, one bag was saline, and the other two were glucose. Shouldn’t my numbers be higher?
My blood pressure was really low, and my heart rate was really high. They said I was dehydrated (shocker), and I remember telling them I’d just come from the clinic and gotten 3 liters of fluids. They loaded me into an ambulance anyway and sent me off 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. That they’d keep me and make it better. 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 going to lose 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 of course, I didn’t want to be admitted!
I wanted to be better and be home with my kids.
I wanted to be able to HOLD my kids without getting sick everywhere. My doctor didn’t seem to think I needed to be admitted but we knew it was the only next step. I couldn’t keep going any other way.
I headed home, packed a bag, and then checked into the hospital. Again, it was impossible to find a vein, even with the special vascular team there to do it. Initially they put me in a shared room, but that didn’t last long. The smell of my roommate’s dinner was completely intolerable. They moved me to a private room with individual ventilation.
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.
An ultrasound was used to find a vein that could support the line. There were no usable veins on my left arm, and only one potentially useful one on my right. Although that one was really small. The other option was a port, and they felt more comfortable with a PICC line (fewer risks). So we went for that one good vein.
I’ll spare you the details because it was pretty horrific. The PICC nurse later said it was the toughest placement she’d done in her 20 years of nursing. She was just praying it would hold because I needed it to so badly. I was at risk for phlebitis because they had to force it through, but thankfully that wasn’t an issue. I had heart palpitations if I laid on my right side, but otherwise, the PICC line placement was a success.
They immediately began pumping me full of fluids and medications. Once my labs came back, they added all kinds of other vitamins.
My sodium was low. Potassium was low. Everything was off. My kidneys were showing signs of strain, as was my liver. My blood pressure sat in the 70/40 range, and the nurse told me to get comfortable. I wouldn’t be going anywhere for a while.
Somewhere around day 3-5 in the hospital (those first days are really fuzzy still) they recommended termination because they’d “tried everything” and I wasn’t getting better. My labs were coming back worse and worse, and I still wasn’t holding in any food. My mom visited me while I was there and later told me how much it had scared her because I looked like I was dying. I actually felt a bit better, though, because I was able to consistently hold in fluids, which hadn’t been possible in months.
They did an ultrasound to confirm the age of the baby and make sure the baby was growing properly despite the malnutrition. She was doing just fine! 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 said we needed to try those next then. They both carried pretty major risks, but at this point, they were just concerned about keeping the baby and me alive. I just wanted anything that would help.
A couple of hours later I was all hooked up, and by the second IV dose of steroids, I felt human. I could feel. Days 8 and nine we tried eating food, 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 back to being sick all the time again. 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. That wasn’t a problem since I only made it four days at home after the hospitalization before the trips to the infusion clinic resumed. I was there anyways.
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 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 that 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, which was pretty upsetting for me, and for the nurse who initially placed it. She was so sad to hear that it had only lasted six weeks since it took so much effort to get it in. The infection ended up being a blessing because when they pulled the PICC, it revealed that my blood was really thick along the line, and there were several clots. That could have been dangerous if one of them had released.
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. Some brought dinners over; others cleaned my house. We had more than one person buy groceries and stock our pantry. While others took up donations to pay our bills. One of my friends even took on the enormous task of picking up my kids from preschool every day. She even stayed at my house to care for them until my husband was off work.
The boys lived at a friends house for a week while I was in the hospital. She drove them 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 it most.
We felt how much we were loved the whole time. That support pushed us through even when we wanted to give up.
When Arden climbs into my lap to nurse, or as I watch her play with her brothers, 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)