More than Just Morning Sickness

] My experience with hyperemesis gravidarum

By Hennie Goldstein,

I got married at the age of 19. Three months later I found out I was pregnant. Mazel tov!Congrats! When should I tell my family? Which OB/GYN should I use? Which hospital? When will the cravings start, the first hints of nausea? I was looking forward to being pregnant. As expected, I soon started to feel nauseated,but not badly enough to affect my daily functioning.

But a week later it got worse. I was pale, constantly throwing up from the smell or thought of food, or even, G-d forbid, someone saying the words “chicken,” “meat” or “fish.” I ate crackers, plain romaine lettuce and sipped sports drinks—anything else would come up immediately. I still managed to get out of bed and teach, although I often excused myself to go to the bathroom and vomit. I remember asking one student to switch seats with someone else in the back of the classroom because her laundry detergent was making me ill.

The car ride to and from work was a nightmare. The sudden short stops and honking of the horns all made me want to throw up. I remember collapsing in my mother’s house, not daring to go back to my apartment because I knew the exact hours when my neighbors cooked, baked and cleaned; there was no way to escape the smell, although a gas mask might have helped. My pregnancy hormones were so strong that I was affected by the slightest odor, no matter how faint. I was rapidly losing weight and started to black out.

It reached a point where I was so weak that I couldn’t get out of bed. I couldn’t talk or read or bear to watch any movement. I couldn’t even lift my head to vomit.

It was then that my wonderful doctor started me on Zofran,an anti-nausea drug. I was to take 8 milligrams every eight hours, but how was I supposed to swallow a pill if I couldn’t put anything in my mouth without throwing up? I tried dissolving it on my tongue without water but the taste was awful; it was worse than just swallowing the pill. Seven weeks pregnant, I was hospitalized with severe dehydration.

I was put on an IV for hydration, vitamins and Zofran. My tiny, depleted veins were often uncooperative. After a week I was discharged, with home care already set up: a visiting nurse who came to check on me and change my IV dressing. No more hospital roommates with crying newborns. No more clueless “Mazel tovs!” and “What did you have, a boy or a girl?” At one point I pinned my curtain closed with a sign stating that I was seven weeks pregnant, diagnosed with hyperemesis gravidarum, and if they hadn’t heard of it they should Google it to learn what it was!

Unfortunately, my yenta{nosy body} neighbors felt the need to interfere. Please, never tell a woman with HG to try crackers,ginger ale, tea, toast, lemon slices, rice, acupuncture, hypnosis,baked potatoes, Pepto-Bismol, having someone daven{pray} for you for 40 consecutive days at Kever Rachel {Rachels tomb} and the Kosel{the western wall} or say “Nishmas”{a deep jewish prayer} every day. The worst was when someone told me that she’d had HG too, but had forced herself to cook and clean and carpool and take the family on trips.

Baruch Hashem,{blessed is G-d} I had a fantastic therapist (for when I was able to speak over the phone), and a friend and aunt who had also suffered from HG. It made me feel that I was no longer alone. There were others who knew that I wasn’t crazy. They too had seen elephants or other hallucinations due to dehydration. By the seventh month of pregnancy I was able to eat and drink again and began to put on some weight.

At 39 weeks, after an easy labor and delivery, I gave birth to a healthy, adorable baby girl weighing 6 lbs. 13 oz.—a real mitzvah maidel! {a girl of good deeds}I couldn’t go back to work because I’d lost my job due to HG. My boss was afraid to take me back, which was probably illegal, but I wasn’t interested in working for her anyway. I spend the next two years taking care of my baby, enjoying every minute of being a mommy.

I must say that having HG made me feel a lot closer to my baby, considering what I’d gone through in order to have her. Some women with HG become depressed or develop anxiety disorders. I did go to a psychiatrist for postpartum treatment, but I told myself that there was nothing to be ashamed of. I was one of the fortunate ones; while it rarely happens, some women with HG lose their babies, and some have no choice but to terminate the pregnancy. Baruch Hashem,{blessed is G-d} both my baby and I made it through with flying colors.

After the birth, I did more research and began to take all the vitamins my body so desperately needed. It took a year for my thyroid to stabilize and two years for my iron to return to normal levels. My esophagus needed longer to heal, so I stayed away from foods and drinks that were negative triggers. Two years went by. I sent my princess off to playgroup, and forgot about HG.

When I got pregnant the second time I felt nauseated but was able to function. For some reason, though, it felt like something wasn’t right. Why wasn’t I sick? Six weeks later, on Taanis Esther,{the fast of Esther, a jewish fast day to remember the miracle that happened to the jews} I miscarried.

Life went on. I avoided thinking about pregnancy like the plague. By then my daughter was in kindergarten and I had a fantastic job working with autistic children. Another three years passed before I became pregnant again.

At four weeks, I told my boss she needed to find a replacement. At five weeks, I was subsisting on ice cream and sports drinks. I made lots of macaroni, and dinner consisted of cereal and milk; anything else was a no-no. At six and a half weeks the roller coaster ride began. I was starting to get comments from total strangers. “You don’t look so great. Maybe you’re coming down with the flu.” I wish I could have worn a sign around my neck telling people the truth.

This time, not only was Zofran added to my regimen but a whole host of other anti-emetics (drugs that stop nausea and vomiting) like Reglan and Diclegis as well as herbs and vitamins, some covered by insurance, others not. My husband bought me anti-nausea pops, acupuncture bracelets and motion sickness pills, none of which worked. The next stop was the hospital.

By then I had lost more than 5% of my body weight. My gums were damaged, my veins worn out and my esophagus was burned. My teeth were bathed in acid. I didn’t know if I was alive or not. Thank G-d, this time my roommate’s baby wasn’t rooming in!

After dozens of pokes and prods by an army of nurses without any luck, my obstetrician found a vein and I was able to be started on intravenous Zofran. I forced myself to close my eyes and nose and suck on ice chips to alleviate the dryness in my mouth. A week later I was discharged from the hospital. But after several days of my homecare nurse fumbling to locate a vein, I decided to get a midline catheter put in my arm. (It’s inserted in the bend of the elbow). The procedure is done with the help of a sonogram, so in late January I found myself on an Erev Shabbos {the eve of the sabbath} sitting and waiting for vascular surgery in the hospital. I was dizzy and nauseated, and the TV blaring in the waiting room only added fuel to the fire. The lights and smells were torturous, not to mention the baby with the dirty diaper or the unpleasant, sloppy man eating his sandwich that reeked of pungent cheeses and garlic. The next thing I knew I was flat on my back on the linoleum, surrounded by doctors and nurses and covered in my own vomit. An hour later I was home with my midline.

Shabbos{the sabbath} was prepared by family members. My daughter was sent off to her cousins. I buried myself under my blanket, looking forward to some rest—only to find blood over all the linens. Apparently, my midline hadn’t been closed properly by the surgeon. A half-hour later I was back in his office. That Friday night my husband lit the Shabbos candles; I was too weak to do it. I slept all Shabbos, getting up only to vomit.

I thought I’d had it by then, but I was wrong. Nothing could have prepared me for what came next. A week later my midline blew and my vein collapsed. By this time the hospital, my new home, had opened up an antepartum ward. Around the clock, I had nurses from every floor trying to find a vein. They gave up. Then the doctors arrived. When they weren’t successful, I decided to go ahead and have a PICC line (peripherally inserted central catheter) put in.

For those of you who aren’t familiar with PICC lines let me tell you—it’s no picnic. The only advantage is that it allows blood to be drawn easily from the site, and intravenous food, called TPN (total parenteral nutrition) can be administered. I had no choice. A kind vascular surgeon came in and inserted a catheter into my arm and directly into the bloodstream through the vena cava, the largest vein in the body, which is located above the heart. Luckily, I hardly felt anything. I begged Hashem {G-d}that this catheter should last. A few minutes after the procedure, an X-ray was performed to make sure the catheter was in the right place. Thank G-d, it was.

I was discharged with the explanation that I would be getting about 2,000 calories of lipids pumped into me from what looked like a milkshake in a bag, plus another bag of vitamins that looked like apple juice. The doctor encouraged me to also try to eat and drink anything I could, even if I threw it up. I went home frail and exhausted, with flaky skin, yellow nails and dried-out eyes.

When I got home, the first order of business was to empty out the refrigerator to make room for my TPN bags. The cost of each bag is more than you can imagine. My homecare nurse taught my husband how to administer everything through the PICC line, and soon the beeping of the pump become part of the regular household noise. I was given a heter{special permission that allows only a rabbi to give the go ahead of something that the jewish bible prohibits} to shut off the alerts on Shabbos and to do whatever had to be done to care for my pump and line. The nights were worse than the days. My whole body was unbearably itchy. When it got to the point that Benadryl wasn’t helping anymore, I called my metabolic specialist. He told me that the itchiness was a reaction to the lipids; I could either live with it or discontinue them, but then I’d be getting only 500 calories of sugar and vitamins.

March arrived along with a snowy Purim.{Purim is a jewish festival that's held in the spring to commemorate the defeat of Haman's plot to kill the jews}  I was happy that the weather was so awful. We gave money to tzedakah {charity}and bought two ready-made mishloach manos{gifts of food that jews send to each other during the holiday of Purim.} to give to our rav{Rabbi} and a good friend who was always helping us out. There was no theme that Purim, no baking hamantashen{cookies in the shape of a triangle }, no dancing or music allowed in the apartment. Someone came over to lain{read}the Megillah{story of purim that must be heard out loud twice over the holiday} for me, and I counted down the hours until Purim was over. With my permission, my husband went out to review his studies on Motzaei Purim{the holidays ending} after my daughter was asleep.

That evening I decided I had the energy to finally take a bath. Taking a shower was too risky and strenuous; I’d fainted countless times standing in the shower, and had to put a bag over my PICC line site to keep it dry. A bath would be much easier. No standing was required, and I could rest my arm on the ledge of the tub. I climbed into the bathtub and reveled in washing off all the yuck. I also washed out my mouth with a washcloth (brushing my teeth was an impossibility; it made me gag, and the acid just got swooshed around more). Then, just as I was about to grab a towel and crawl back into bed, I was hit by an excruciatingly painful spasm. It came out of the blue and washed over me in waves. I couldn’t move or breathe; I was in agony. I heard my husband come into the apartment but I couldn’t call out for help, as that only made the pain worse. I started throwing things, banging on the wall. Luckily, he heard the noise and opened the door. I whispered one word:“Hatzalah.”{jewish emt and paramedic volunteer organization}

This wasn’t the first time that Hatzalah had been summoned during my pregnancy. With each wave of pain I had to squeeze someone’s hand as hard as I could. I was then carried out on a stretcher into the snow, my neighbors gaping as I was whisked off to the hospital.

The whole staff knew me by now. After sonograms and an MRI to rule out kidney stones, and a couple of morphine shots for pain, I was discharged from the obstetrics department. They didn’t know where the pain was coming from, but they determined that it wasn’t obstetric in nature. I was brought down to the emergency room and seen by a gastroenterologist.

It turned out that the antacids I was getting through my PICC line were working, but a lot of damage had already been done to my digestive tract from throwing up so much. The pain was muscular, and the healing would take time. They told me it was like having broken ribs. There was nothing to do but suffer it out.

Baruch Hashem,{blessed is G-d} I started eating lollipops (only the yellow ones) and sipping sports drinks. I was able to take a fantastic drug called Dexilant that helped with the gastrointestinal pain in combination with Tylenol suppositories, which took immediate effect. Doing yoga and listening to Dveykus{peacful jewish music} albums helped me breathe through the pain and keep me calm. I was eventually able to walk to the bathroom rather than crawl or use a bedpan and entertain the occasional guest. I even got back to all the friends and relatives who had left me countless messages, texts and emails asking how I was doing and what they could do to help. Some people who didn’t know the extent of my suffering were angry, annoyed that I was ignoring them. I had to explain to them what I was going through. With only three weeks left until Pesach, {passover}cleaning my apartment and making Yom Tov{a holiday} was out of the question. It was either going to my mother or to a hotel near the hospital.

One night I woke up with chills and a high fever. Like a broken record in my head I could hear the warnings of the doctors and nurses telling me that one of the risks of a PICC line was infection and fever. I went to my regular doctor, who lives on my block, to have it checked out. He thought that the site looked infected and that the line might need to be removed but he wasn’t sure, and suggested that it been seen by the doctor who had put it in. I went back home and made it into my building, but not into my apartment.

I don’t remember fainting, but when Hatzalah came to take me to the hospital I was too dizzy to stand up. My blood pressure was extremely low. Some of the neighbors who weren’t aware of my situation advised me to sue the building for my fall!The head emergency room doctor was summoned and he removed my PICC line. A few hours later it was confirmed: staph and blood infections. My arm felt free, but it was back to regular IVs. I was now forced to eat and drink, since I was no longer able to get TPN. My father and husband were enlisted as babysitters to make sure I nibbled on something every few minutes.

The emergency room doctor kept telling me that if I didn’t eat, I’d be causing harm to my baby and to myself. I had to eat. If we wanted more children, he informed us, there were other options, and he strongly advised that I consider adoption in the future. I replied that I needed to get through this pregnancy and not think about the future.

I found it extremely exasperating when dumb hospital yentas or relatives made dopey comments: If only they were forced to eat or had to put on weight! I was so lucky to have HG, they insisted, because it would keep me skinny. I had people tell me it was all in my head and that I was selfish for not being there for my family; what I needed was a psychiatric evaluation. One “friend” diagnosed me as an anorexic. A well-meaning woman told me how she had gone through the same thing 11 times, even after the doctors told her to stop, and now had 11 children from whom to shep nachas.{be proud of} I asked her politely to leave before I exploded. It was a sensitive topic she shouldn’t have shared! Getting pregnant is something to be discussed with your rav{rabbi} and your doctor and your spouse—and no one else.

All the bikur cholim{visiting the sick} organizations knew me by name. It was imperative that I be hospitalized to be treated with antibiotics and for my infections to be monitored around the clock. Everyone was involved in my case: infectious disease specialists, my OB/GYN and a team of cardiologists. The first drug I was given was intravenous Vancomycin. Within moments of it being administered I thought I was going to explode. My whole body itched and I was as red as a tomato, an allergic reaction called “red man syndrome.” I was given Benadryl and continued taking the antibiotic at a lower dose, since it was the only one that was effective and safe to use during pregnancy. For some reason I was given a room in the geriatrics ward, among patients suffering from dementia, Alzheimer’s, diabetes and other age-related illnesses. I was the youngest one on the floor, a breath of fresh air to the doctors and nurses.

Unfortunately, my roommate wasn’t much company. In fact, she was a nightmare. She cried all night like a newborn and ate various strong-smelling ethnic foods. When I contemplated switching rooms, I realized that all the patients on my floor came with a pekel.{a package} I begged to be moved to the antepartum or postpartum wards but it was too risky. At least I didn’t have to share a bathroom.

After eight long days I was allowed to go home, provided I promised to nibble on something throughout the day and try not to throw up. Yeah, right. That was virtually impossible. Instead, I chose to have a nasogastric tube put in, because the thought of having to eat around the clock terrified me. A nasogastric tube goes down the nose, into the throat and down into stomach. I ignored the doctors who told me how uncomfortable it was and chose to listen to the ones who supported it. Two doctors and a nurse were recruited. One held my left arm and the other my right to prevent me from moving.

I wouldn’t wish this tube on anyone. I cannot even describe the misery of having a nasogastric tube—the extreme discomfort, the inability to cough, talk, smile or cry. Each swallow of saliva was a nightmare. Since I couldn’t speak or move my head I typed out a note on my phone: TAKE IT OUT!I couldn’t bear another minute.

An hour after the tube was put in my mother returned from her vacation in Florida and came directly to the hospital to see me. While the tube didn’t allow me to cry, there were tears rolling down my face. She demanded that it be removed, unable to watch me suffer like that.

After the tube came out I promised that I would force myself to eat, silently begging Hashem{G-d} for His help. Three times a day a nurse brought me a can of Ensure, which I sipped slowly through a straw, along with a cup of ice cubes. Sometimes it stayed down and sometimes it didn’t. The next step was trying real food, anything that agreed with me. The first thing I attempted was plain cookies. I was like a baby being introduced to solids for the first time. Eventually we found what worked for me.

For the next few weeks my diet consisted of peanut butter on rye bread, of all things. It took me a whole day to finish one slice. Next was an array of sucking candies and fresh green beans my husband would cook before heading off to work. If they came from a can I couldn’t look at them. Armed with several foods I could handle, my doctors gave me the okay to go home.

Pesach came and I was given a heter{permission} to eat kitniyos.{ The medieval Jewish sages placed a ban on eating legumes (kitniyos) on Passover, because they are similar in texture to chametz—even bread can be made out of their flour—so people might assume that if, for example, cornbread can be eaten on Passover, wheat or rye bread can be eaten too. This prohibition includes rice, beans and corn. This injunction was unanimously accepted by Ashkenazic Jews; many Sephardic Jews, however, continue to eat kitniyot on Passover

].Baruch Hashem,{Blessed is G-d} I had some strength; I started showering again and putting on makeup. Putting on a shaitel{a wig that an orthodox jewish woman wears to cover her hair}was still too much but I didn’t care.i wore bandanas and turbans. I tried soup over Yom Tov{the holiday} and it stayed down. I gradually started to eat again as my nausea decreased. I began to gain weight and feel more alive.

Our mezuzos {a parchment inscribed with religious texts and attached in a case to the doorpost of a Jewish house as a sign of faith }were checked along with my husband’s tefillin{Jewish phylacteries.}. They were all pasul{damaged}. I don’t know if that was connected to my suffering but it was weird. New tefillin and mezuzos arrived. We donated money to various tzedakah {charity}organizations that promised yeshuos.{salvage}

I am now in my third trimester, and can once again say that I feel like human being. I’ve gone back to cooking, cleaning and taking care of my family, although I am careful not to overwork myself. I am grateful to be on the road to recovery from the emotional and physical effects of Hg. Pregnancy is no joke. It cannot be taken for granted.

I joined an organization for women who are suffering or have suffered from HG called the HER (Hyperemesis Education & Research) Foundation. Within minutes of reaching out they got back to me. An hour later, three books about HG were delivered to my door. One was a medical explanation of the condition, the next told the story of one woman’s personal journey, and the third was for my daughter, a book for children whose mothers have HG. It was a fantastic way to explain to my daughter, on her level, what was going on and it calmed her down. In addition to the books, the organization sent me $100 in cash to buy my daughter or myself something special.

In the days to follow I was contacted by several frum {orthodox}Jewish women who also suffered from HG. They too were members of HER. The head of the Foundation was wise enough to hook me up with other frum members after I’d mentioned in conversation that my religion doesn’t allow us to terminate a pregnancy unless it’s absolutely necessary and only with a rabbi’s go-ahead, and that we can’t eat X, Y and Z because it’s not kosher.

I felt blessed to have my new “family.” Jewish or not, they knew what I was going through. They cried with me, laughed with me and heard me out. The HER Foundation has a fantastic website, helpher.org, where women with HG and their family members can get the support they need.

HG research is still in its infancy. Doctors still can’t pinpoint why one woman suffers and another is fine. There is no cure and no prevention, but there is support out there. There are so many people to whom I owe thanks, but the subject is still too fraught with emotion.

This article is dedicated to all of them.

 The author would like to inform the public that B"h{blessed is G-d} she gave birth to a healthy baby boy , on time ! Bris{circumcision ceremony} was Erev Rosh Hashona! {the eve of the jewish new year}