It was terrifying, going from being a busy working mom who loved her life and her family, to a frail invalid too sick to read or listen to shiurim, and unable to interact with others. A lot of women get depressed from such an ordeal, but it was here that my preparation in the emotional realm came into service. Although incapacitated physically, I had the inner resources to stay afloat emotionally because I’d done the work before.

Despite my inability to communicate verbally with my family, I still gave off strong vibes that they could read: We’re going to be okay. We’re going to get through this, together as a family.

We arranged to have meals delivered, and our older children, neighbors, and friends rallied to keep the family functioning. There was one food I could eat, a vegetable broth my mother cooked and blended for me. While she was happy to share the recipe, no one was able to duplicate it closely enough for me to tolerate it. My mother lives in Montreal, and the borders were closed due to Covid. It was complicated for her to freeze the soup and find drivers to deliver them to me in Monsey. But she persisted, and she literally kept me alive with that soup.

Then, as difficult as everything was, I developed new symptoms that were as terrifying as they were debilitating. My vision suddenly got very blurry. I could barely see the letters on the keypad of my phone, which limited my ability to communicate even further.

Around the same time, I started having balance issues. I was already very weak, but now I couldn’t walk at all without someone supporting me. I needed help to get from my bed to the bathroom. I also developed excruciating headaches. We were scared something was seriously wrong. We went back to the doctor, but he reassured us that this was all part of  HG and it would pass after the birth.

My sister contacted the HER Foundation again, asking them if they had any suggestions. They told her that my symptoms indicated a severe and dangerous thiamine deficiency. Thiamine, or Vitamin B1, is vital for healthy functioning of the brain, heart, and body, and is depleted after only two weeks of inadequate nutrition. Deficiency is characterized by changes in vision, balance, and mental clarity, and can quickly become life-threatening. People often view vitamins as optional. But vitamins are critical for many body functions, and unless a person is getting optimal nutrition, supplementation is required to prevent complications.

More than 90 percent of women with HG have some level of thiamine deficiency, but since its symptoms, including weakness and severe nausea, so closely resemble those of HG, it’s usually not diagnosed or treated, yet it intensifies the HG symptoms.

The HER Foundation urged me to ask my doctor to arrange IV replenishment of B1, and to take oral supplements as well. However, when I asked my doctor about the need for thiamine, he told me it was unnecessary, and again assured me that once I gave birth, everything would be fine.

I was too sick to comprehend what a dangerous situation I was in. I trusted my doctor when he told me that I had nothing to worry about, as he is highly regarded in my community. However, I decided it couldn’t hurt to start taking oral supplements of benfotiamine, despite his dismissal. Oral supplements of B1 are safe and whatever the body doesn’t need is expelled naturally.

I didn’t realize that this small effort on my part was saving my life and the life of my unborn baby. Although the oral supplements weren’t enough to revert my symptoms, I found out later that they protected me and my baby from a much scarier fate.

I didn’t know then that I was at high risk for lasting complications to my brain, heart, and nerves, including developing a potentially fatal neurological condition called Wernicke’s Encephalophy (WE). Only one out of five fully recover from WE, and it carries a fetal loss rate of 50 percent.

Unaware of these ramifications, I quietly took my B1 supplements. Still suffering unbearably, I counted down the hours until the birth. I was sure that as soon as the baby would be born, I’d return to my normal, healthy self, as had happened after my other births.

Unfortunately, this hope was just a fantasy.

After the baby was born, I was as weak as he was. I couldn’t lift him from his bassinet, and needed him to be placed in my arms. Although the severity of the nausea went away, I still had a lot of difficulty eating. I was still suffering from blurred vision and imbalance, and needed help getting around the house. My muscles had atrophied, and I had to learn anew how to do basic things like walking.

I was also overwhelmed by incredible fatigue, despite not getting up for the baby at night. I felt like I was living in a fog.

I went to a physical therapist to help me rebuild my muscles, and she told me that in the 20-plus years of her practice, she’d never seen someone whose body had been so debilitated by a pregnancy. That was hard to hear, but I was hoping that things would improve. Baruch Hashem, they did, although terribly slowly.

When my baby turned a year old, and I was still significantly limited in my functioning, I realized there was more at play here than regular recovery from HG. I reached out to HER again, consulting with their medical experts as well as with an international expert on thiamine. What I discovered shook me. Had I been given IV thiamine during the pregnancy, it probably would have reduced many of my symptoms and averted the long-term debility I was battling. It was so painful to learn that all this could have been prevented.

Surprisingly, most medical professionals, even high-risk doctors, aren’t familiar with the impact of B1 on HG. Nor are they aware of the importance of including IV vitamins along with medication and fluids in HG treatment, to reduce nausea and prevent complications.

The recommended form of B1 for all HG patients is benfotiamine, as it is better absorbed by the body. Aside from preventing deficiency, taking 100-250 mg of oral benfotiamine daily during HG can make HG symptoms easier to bear, as thiamine deficiency mimics and exacerbates HG. B1 is nontoxic and can be safely taken at high doses.

Oral B1 is helpful in prevention and for treating milder deficiencies. If significant symptoms of deficiency develop, they need to be corrected with high-dose IV thiamine.  Otherwise, recovery is lengthy and uncertain, which was the situation that I found myself in.

It was here that I really needed those lessons in emunah and bitachon. I’d been so steady through the difficulty of the pregnancy, but realizing that I was dealing with a preventable long-term condition was so difficult to accept. Hashem is in charge, and He obviously didn’t want me to understand then what I know now.

However, now that I do know what I know, I’m determined to share this information with others. By giving women the tools to be their own advocates, I hope to prevent them from suffering like me.

In order to accomplish my goal, I reached out to Kimber MacGibbon, RN, Founder and executive director of HER, to help me bring their resources to our community. Kimber herself is an HG survivor and one of the biggest HG experts in the world. HER’s treatment protocol was created by a team of HG specialists and is the most comprehensive HG treatment plan worldwide. HER has recently isolated the gene that causes HG, and has a vision of a cure. But in the meantime, their treatment approach is the most effective option available for battling HG.

I spent hundreds of hours researching HG management, and with Kimber’s guidance, began to educate women about their options, individually, and in public forums like the Lakewood Bikur Cholim Women’s Health Expo. I saw that most women weren’t given adequate doses and combinations of medications, and almost none had been given vitamins through IV.

Knowing what to ask for gives a woman a better chance of getting her doctor to offer effective care. Especially in our community, where women are moser nefesh to have multiple HG pregnancies, preparation is crucial. Here, education isn’t just important. It’s life-saving.

Many women have concerns about taking medication in pregnancy. However, it’s important to understand what the actual risks are in clear terms. Every pregnancy, without any medications, runs a three to five percent risk of a baby being born with a birth defect. Adding HG medications to the statistics raises the percentage so slightly, if at all, that it is hard to quantify on a graph.

However, the risks to mother and baby of untreated HG are much higher. One out of three HG babies will not survive or will be born prematurely. Those babies that do survive are at significant risk of long-lasting neurological and emotional disabilities. In other words, taking medications that stop a woman from vomiting and allow her to eat and drink is usually safer for both mother and baby.

And there are many options to pursue beyond Zofran, a commonly prescribed anti-vomiting medication.

There isn’t yet a cure for HG, but there are ways to reduce the misery it causes. HG care is complex and nuanced, but we owe ourselves and our babies the opportunity to have healthier pregnancies. If we’re willing to be literally moser nefesh to bring more children into this world, then we should give ourselves the opportunity to have healthier pregnancies.

I wish I’d known all this before my pregnancy. My baby is now almost two, and I am still quite physically limited. My eyesight is still weak and my balance is still shaky, and I can’t carry my baby more than a few steps. The fatigue and lack of stamina are the worst. I rest a lot during the day, so I can be a present mother when my kids come home. I don’t go out shopping or to simchahs, as that takes too much strength.

It’s been very difficult. It’s been very lonely. I’m still struggling.

Despite that, I’m determined to help as many women as I can. HG is a very real challenge in our community. All women with HG deserve to have the best possible outcome for their health, their babies, and their families. I know they are brave. I know they are heroes. I want them to be truly ready.

The narrator can be reached through Mishpacha. 

What is Thiamine Deficiency in Pregnancy?

Thiamin(e) is also known as vitamin B1. It is a water-soluble, nontoxic B vitamin critical for a mom’s heart and brain function, as well as a fetus’s development. It’s depleted within two weeks of not eating normally. Thiamine deficiency damages the brain, heart, eyes, and nerves. Potentially life-threatening complications can develop if the deficiency is severe. Much more B1 is needed during a HG pregnancy and over 90 percent of HG moms are deficient.

Many medications also lower B1 levels in the body, such as:

acid reducers

anti-seizure medication

diuretics

hormones

IV nutrition (TPN)

antibiotics

Signs and Symptoms of Thiamine Deficiency

difficulty speaking

worsening HG

weakness

confusion

vision changes

rapid heart rate

loss of balance

dizziness

memory Loss

depression

Treatment

Low B1 levels mimic and worsen HG, making it difficult to get relief with medications.

A thiamine-deficient woman should take oral B1 daily and request B1 in IV fluids. Always get IV thiamine with dextrose (D5 or D10) to avoid life-threatening complications.

Take a daily oral supplement of 100 mg of benfotiamine during weeks 4-20 of pregnancy, and then 250 mg daily until three months after birth.

If severely depleted, receive IV thiamine 500-1500 mg/day for 7+ days until you’re able to eat and take B1 orally.

Prime Nutritional Sources of Vitamin B1

seeds and nuts

whole grains

enriched noodles/flour

peas and beans

some meats

Information from the HER Foundation.

Note from a reader:

I am looking to get in touch with anyone who has information or recovered from IC (Interstitial Cystitis ) and PBS (Painful Bladder Syndrome).  I have tried the following: cystoscopy, fulguration of bladder ulcers, Botox, anesthesia cocktail installations, physical therapy and IC diet (IC Food list). So far, none of these procedures have brought significant relief or a cure.

If you have information on this disease, please contact familyfirst@mishpacha.com.

(Originally featured in Family First, Issue 843)