Not Just In Our Head: Hyperemesis Gravidarum Awareness

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Meet Alicia.

Alicia met and married Adam right after high school and they started a family. Her husband was deployed in the army at the time, and if that wasn’t hard enough, she soon discovered she was dealing with one of the worst pregnancy diagnoses ever: Hyperemesis Gravidarum (or HG). She endured two more pregnancies with HG and now has three kids: Aubrey, Aaron, and Addison. Alicia is going to answer some questions for us all about HG and share her story with you all. I am honored to be able to help her get her story out. She wants to help encourage other moms with HG and bring awareness to the public about this serious condition. May 15th is Hyperemesis Gravidarum Awareness Day.

Alicia, briefly tell us what is HG?

Hyperemesis Gravidarum (HG) is extreme vomiting during pregnancy. It is quite rare and usually affects less than 2% of pregnant women. Normally ending between the 12th and 20th week but can continue until delivery. Extreme vomiting, dehydration, weight loss, being unable to care for yourself or family is what makes it different than normal morning sickness. There is a likelihood that HG is genetic. HG is not in our head and not something we can just talk ourselves out of. It is extreme, uncontrollable sickness during pregnancy.

 

What are the dangers of HG if not treated cautiously or monitored closely?

Dehydration, malnutrition, kidney damage, brain/nerve damage and there are risks of birth defects for the baby.

What did your HG symptoms look like?

For my first two pregnancies I felt very sick from 4-20 weeks. I vomited 10-30 times a day. I lost about 30 pounds each time. I needed home nursing and a PICC line (peripherally inserted central catheter) to get fluids and medications into my body because I couldn’t keep anything down. With my 3rd pregnancy I was sick from 4 weeks until 33 weeks. I was vomiting 100-150 times a day. I lost 80 pounds. I also developed a dangerous condition called Wernicke Encephalopathy. It is when your body runs out of B1 vitamins and causes swelling and damage to the bottom of your brain leading to memory loss and other nerve damage. I also experienced hallucinations and it was very scary. I had to relearn to walk, eat, and had trouble speaking for a while. I am still in the recovery process 2 years later from the long term effects of nerve damage.

What shocked you the most about HG?

That it never ends. It’s not like waves of nausea that come and go throughout the day, it’s constant from the time you get up to when you go to sleep.

How did other people react to your HG?

A lot of people think that it’s just morning sickness and that I needed to fight through it. They don’t understand that it’s not just sometimes I felt sick, it was a severe nausea at all times. Even talking about food, beverages or feeling sick made me throw up. Some people treated me like I was just crazy and needed to get over it but there were others who were understanding and helped me.

What did your medical care look like with HG?

With my first two pregnancies my doctors were fantastic. They proactively helped with interventions. After being hospitalized for dehydration they could see how sick I was. I was given a PICC line with a Zofran pump and received home health care.

With my 3rd pregnancy we had recently relocated and unfortunately my experience was very different. They did not listen when I asked for meds or fluids and did not understand that this was not my first time having this condition. The day I found out I was pregnant I called and was told “We don’t see women until after 12 weeks so we can set up an appointment in 8 weeks.”

I told her I was high risk and needed to be seen right away or I would end up in the hospital. I was laughed at and told “A lot of women have morning sickness and it is not an emergency.” I ended up in the hospital by the end of that week.

What helped you the most during your HG pregnancies?

Not moving, not smelling anything, and being reminded that I mattered. IV fluids and TPN (total parenteral nutrition) helped some but other then that there were no medications that made it go away or made me feel better.

What did you wish you had known before experiencing HG?

That sometimes you have to be confrontational and direct with doctors to get them to listen to you. Being worried about upsetting people is not going to help you advocate for your health care needs. HG is nothing to mess around with or take lightly.

How have each of your babies and deliveries been affected by HG?

My kids were born at 37 weeks, 35 weeks, and lastly 33 weeks. I believe my premature deliveries were partly due to HG. Luckily the same muscles you use to vomit are the same you use to give birth and I had very easy labors! Due to nerve damage I felt no pain at all with my last delivery. Fortunately my water broke at home and I was able to get to the hospital in time because I had no idea I was in real labor. If I could just deliver babies and not have to be pregnant I would be all about that. An unmedicated childbirth sounds like a walk in the park compared to living with HG for months. My older two kids were born healthy in spite of being a little early but my youngest was not. She needed breathing support and spent a lot of time in the NICU due to being early and having birth defects.

Explain the diagnosis and symptoms you and Addison suffer from today? Could they have been prevented?

Both Addison’s and my conditions could have been prevented by adding a multivitamin to my IV fluid bags – something that I had with my first two pregnancies and had asked for in my 3rd but was told I was not that sick and would be fine. Having lived through it twice already I thought maybe I would be fine. I had no idea how important vitamins were. When you are getting IV fluids and nothing else the fluid flushes all the important nutrients from your body. This is why I developed Wernicke Encephalopathy. I actually do not remember most of my pregnancy due to this condition. I still have some issues today from the nerve damage but I have learned ways to cope with it and I know when I need to ask for help.

Addison’s birth defects are a result of not receiving enough vitamin K during pregnancy. She developed Vitamin K Embryopathy. This condition is very rare. She was born without a nose bone, has 3 heart defects, a severe spinal defect, short long bones, struggles to gain weight, needs to be fed via g-tube, has severe hearing loss and has some developmental delays. If we had gotten vitamins in IV fluids during pregnancy she would not have these issues. So far her cognitive functioning is good but we need to wait and see how she grows and develops over time to learn what her long-term disabilities will look like. Most of Addison’s care is symptom based.

What would you tell a newly pregnant mom who just got diagnosed with HG?

That if you are vomiting and have not kept anything down for 24 hours GO IN. It’s not a time to try and avoid the ER or clinic. If they give you fluids ask for them to add vitamins. If they say no ask them what the risks are for adding them and not adding. They will do it if they know you understand all the risks and you will know that you and your baby are getting what you need. While most of the time HG is very hard to deal with it normally does not have any lasting effects on the baby or the mother. But if you ever feel you are not getting the help you need please ask for a new doctor or more help. Staying hydrated is the most important thing but if you are taking nothing by mouth for more than just a day here and there you will need more than just fluids. Also, when people ask if they can help say yes. Make a list of what you need help with and if someone is willing let them do it!

Share your favorite go-to resources for HG awareness and support.

The HER Foundation is a fantastic website for mothers and for Doctors as well. It has many good treatment ideas and lists of medications to try and when.

Help me in thanking Alicia on HG Awareness Day for taking the time to share her story with all of us by sharing this post with your friends. Her and I both hope that we can all be more aware and supportive of our sisters who suffer from this condition. We also hope that if you suffer from HG you will get the support and medical care that you need.

 

The content on Rochester MN Moms Blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

 

woman kneeling in front of toilet

2 COMMENTS

  1. I hope you sued the doctors and facility which didn’t treat you correctly during the last pregnancy.

    • Thanks for your concern Becky. They do have a good case for suing and want to/plan to do that. However, given that life is a little chaotic currently with health/medical needs they haven’t had the bandwidth to start that process yet. But it is definitely part of the plan.

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