Friday, June 17, 2011

Hyperemesis Gravidarum: A personal account

After one of my dear friends started experiencing morning sickness, I decided to do research on remedies for morning sickness to share with my clients. I also asked moms I knew for their morning sickness remedies. During my research I started learning about Hyperemesis Gravidarum (HG). As moms started replying to my requests for morning sickness remedies, some of the moms started to tell me of their experiences with HG. My heart went out to those moms. Below is a personal account of a mom who experienced HG and how she got through it. This story moved me to tears, and I asked if I could share her words exactly as they are. Posted with permission.

With HG I wasn't just nauseated, I felt like I needed to rush to the toilet to puke out my guts all the time.  Actually vomiting brought no relief from this feeling of urgency.   I received lots and lots and lots of advice on how to handle “morning sickness” but the truth was, without medication I did vomit constantly.  I don't know how much detail you want but I will share a couple of examples to illustrate.  

During my first pregnancy, I really had no way of knowing how much vomiting was “normal” during pregnancy.  When I told people at the doctor's office how far along I was, they wanted me to come to a class, have a pregnancy test, get some information and then they would make me a preliminary appointment.  So I started the process.  At the class, I clutched a plastic bowl and managed to raise some red flags with the nurse.  She got me an appointment two days later.  However, before I made it to the appointment, I ended up on the floor of our bathroom.  Almost like contractions in labor, the bouts of vomiting kept getting closer and closer together.  All I could do was pull a couple of towels down next to me.  I would lift my head up just enough to heave and vomit onto the towel.  I had nothing in my stomach, not even water.  Bile and dried blood were all that came up.  My throat was raw and sore. It was when I began to beg God to let me die so that I wouldn't have to endure the pain any more that I realized the severity of my predicament.  I asked Tom* to take me to the ER.  Once there they gave me fluids and anti-nausea medication. 

Many more trips to the ER followed through the rest of that pregnancy, it terminated in a miscarriage three weeks later,  and the two following pregnancies.  It was during one of these trips that the second episode occurred, although I don't remember when exactly it was.  I was once again vomiting from an empty stomach.  I begged the nurses and attendants to give me water.  Tom asked them for water. They refused because they knew I was too sick to keep the water down.  They were going to give me IV fluids and medication and told me I needed to wait for that.  The problem was that in the 15 or so minutes that I had to wait, I would throw up multiple times.  I craved the feeling of cool, clear water coming back up my throat as opposed to the harsh and bitter bile that was coming up anyway. 

During my pregnancy with John, my 17 year old sister came to stay with us for several months.  She took care of me and also kept me company.  Tina cleaned, brought me food, and made sure I always had a bowl handy.  Although I was not under a doctor's order to stay on bed rest, I wasn't able to do much because of the sickness and the side effects of the medication.  

Since my treatments for both pregnancies were radically different I think I should explain here the  various medications given.  With John, I was given a PICC line and ordered 2 bags of IV fluid per day and Phenergen given every 8 hours.  I was unable to give myself the medicine through the IV because it put me to sleep so fast that I couldn't flush the line and cap it like I needed to.  With Sarah I was in a different state and had a whole new set of doctors.  There was no precedent for allowing an HG patient to receive fluids at home.  They tried to control the vomiting with Phenergen.  The medicine would put me to sleep but did not stop the heaving and vomiting.  I was finally hospitalized and a complex mixture of drugs worked out for me.  I was put on Regalin, which had the side effect of making me very, very anxious and nervous.  To counter this, I was put on Benedryl to calm me down.  I was prescribed Unisom at 12 hour intervals to lessen the mucus and saliva in my mouth.  It seems that there were one or two other drugs that I was also to take at certain times during the day.  Tom purchased a large weekly pill case, the kind that have slots for morning, lunch, dinner, and evening so that he could keep track of everything.  (Funny story:  About this time we went to Mom and Dad's for a visit.  Chris came home and saw the pill case on the dining room table.  He asked which Grandma had come for a visit.  Although I usually have a pretty good sense of humor, it was more than 5 years before I was ableto actually laugh at that story.) 

At the time of my pregnancies, Zofran was fairly new.  It was outrageously expensive, thousands of dollars for a single prescription, and there was not enough data for doctors to feel comfortable prescribing it to expectant mothers.  I was given small doses of it in the hospital and for a time it was part of my regimen with Sarah.  However, the doctors felt very strongly about getting me off of it in spite of the fact that it worked much better than anything else at controlling the vomiting and had fewer side effects. 

At the time I was pregnant with Sarah, my sister was college and there was no one to stay with me for an extended period of time.  My Mom came out for two weeks but couldn't stay.  I still had siblings living at home who needed her.  Things were also complicated by the fact that I had to care for a small toddler. We tried to have members of the ward care for him during the mornings but going to a different home each day proved to be more than he could handle.  He would hide in the mornings so that Tom couldn't take him anywhere. 

It was at this time that John also began hording food.  Usually we would leave crackers or bread on the table for him to eat during the day.  However, sometimes we would forget or I would be late getting out of bed.  So he started taking the boxes of crackers and loaves of bread and stashing them in his room.  When we found them we would take them out but we couldn't very well punish him for what was in reality a survival technique.  It wasn't until after Sarah's birth, upon finding  him trying to eat a slice of completely green and black bread, that we put our foot down about food in the bedroom. 

What I wished for so often during that pregnancy was an adopted Mom.  I needed someone to come into my home, clean my dishes, do some laundry, feed my son, play with him, talk to me and leave me with something healthy for dinner.  The thing was, I needed someone every day.  Just about any type of odor would set me gagging and possibly throwing up—which then had the potential to spin out of control.  So even something as basic as bathing myself or brushing my teeth became a risky endeavor. Most of the time I didn't even dare to walk into the kitchen if there were dirty dishes in the sink.   I craved all sorts of homemade foods, but I couldn't stand the smell of cooking.  Even Tom heating up food in the microwave could set me off.  I felt as helpless as a baby and even more misunderstood. Almost no one outside my immediate family knew how serious my condition was.  To most people it seemed that I was making too much of what was actually a normally severe case of morning sickness. 

The emotional isolation was almost as bad as the physical setbacks.  Even when I did get the rare opportunity to be in a social setting, I found that my life, being filled with vomiting and sickness, hardly made for pleasant conversation.  My interaction with my husband was limited due both to my illness and his exhaustion.  I couldn't hold my son because his energetic movements made me sick.  It seemed that no one could possibly understand how sick I was.  

(I am amazed at how many people are unfamiliar with this condition.  After her sojourn with me, my sister attended BYU Idaho and enrolled in a Child Psychology class.  Part of the class discussed pregnancy and birth.  At one point, the instructor described HG to the class.  One student asked if it was possible to get so sick that you could die.  The instructor dismissed that concept out of hand and said something to the effect that your body would never allow that to happen.  My sister raised her hand and respectfully disagreed with her instructor using her firsthand experience as my nurse as evidence.  Apparently she ended up answering questions on the topic for most of the class period.)  

About six months after Sarah was born, my mother called me.  She was Relief Society President in her ward and there was a young mom who was being released from the hospital after being treated for HG.  She asked me to call and talk with her.  I felt funny since I didn't know the woman but I called and spoke with her.  She told me how she felt and I knew what she was talking about.  I told some things to do and not to do.  Mostly, I told her not to feel guilty about all the things she couldn't do.  Just staying alive, and keeping the baby alive, was about all she could handle.  

I assured her that I was fine now.  Sometimes it can seem like you will be sick forever.  But once the baby is born, the sickness vanishes like a shadow at noon.  (Actually, I was pretty lucky because I was able to stop medication at about 20 weeks although I still had “normal” morning sickness for the entire pregnancy.  Some women have HG the whole 9 months.) She cried.  I cried.  I wished so bad that someone had called and talked to me like that when I was pregnant. 

Finally, I will share with you one of the sweetest experiences of my pregnancy dramas.  I had just gotten the sickness under control while expecting Sarah.  I was taking so many drugs that affected me physically, mentally and emotionally.  I was exhausted and sick.  I was trying to take care of John again. He wasn't even 2 yet.  Several times within about a week people had asked about my condition and then commented something to this effect,  “Well, at least you can look at how much you love John. You know all this will be worth it when this baby is born and you will love it just as much.” 

This wasn't very comforting.  Then one day, watching John play in our front room, I realized that I didn't love him.  I mean, I knew that somewhere inside of me I really loved him and loved Tom but I didn't feel any love.  I didn't feel the happiness that comes from being with people you love. That night I prayed harder than I had ever prayed before.  I asked Heavenly Father to show me what I needed to do so that I could feel that love again.  I thought maybe I needed to serve my family more but I didn't see how I possibly could.  I just didn't see how I could endure everything I was going through without the joy that comes from loving my family.  I fell asleep that night praying for the strength to do whatever I needed to do. 

In the morning, I woke up with so much love in my heart I thought I would burst.  I loved my little boy. I couldn't  wait to feed him breakfast and watch him play.  I loved my husband.  I was so grateful for everything he was doing for me.  I was so glad to be his wife.  I was so thankful that he was the father of my children.  Throughout the rest of my pregnancy, I was filled with this overwhelming love.  I believe that the lack of emotion was a side effect of being sick and on so many different medications. The Lord blessed me to overcome this side effect in order to lighten my burden and bless my family. 

*Names have been changed to respect the privacy of this family.

1 comment:

  1. This feels like my last five weeks. It's so spot on I can hardly stop the tears. I can't begin to convey the guilt I've felt the past few weeks as I've wished I'd never gotten pregnant. It's been scary to feel this awful and know I'm only 10 weeks in.
    Phenergen did nothing for me, and fortunately I was switched to Zofran four weeks ago. It has helped with some of the vomiting, along with encapsulated ginger. But the nausea, dizziness, vomiting to the point of getting petechiae and general feeling of slow internal death has remained. My heart goes out to this woman and her family. I know only a small bit of what she went through. I thank her for sharing her story.