Well: A Royal Spotlight on a Rare Condition

News that the Duchess of Cambridge, the former Kate Middleton, is pregnant spurred headlines and excitement around the world on Monday, but the exuberance was tempered by word that the mother-to-be has been hospitalized with a rare form of severe morning sickness.

Most people have never heard of the condition, called hyperemesis gravidarum or H.G., now getting worldwide attention. To learn more, we spoke with Dr. Marlena Fejzo, an obstetrics researcher at the University of California, Los Angeles. Dr. Fejzo twice experienced H.G. during her own pregnancies and is an adviser and board member for the Hyperemesis Education and Research Foundation. We talked about the risks of H.G., why it happens and whether its occurrence can predict the sex of the baby.

Q.

What is hyperemesis gravidarum?

A.

It’s severe, debilitating nausea and vomiting in pregnancy that generally leads to more than 5 percent weight loss and requires fluid treatment. Sometimes, in more extreme cases, it requires nutritional supplements.

Q.

Are there treatments?

A.

Doctors try to give IV and anti-nausea medication at first. About 20 percent of the women who contact the Hyperemesis Education and Research Foundation require tube feeding. It’s very serious. They have to have a tube inserted above their heart. Blood tests have to be done every day, or every other day, and the bag of nutrients has to be monitored to make sure it’s personalized for the woman’s needs. But I don’t think Kate Middleton (based on news reports) has it that bad. She’s just gone in for the IV fluids.

Q.

How common is H.G.?

A.

It probably depends on how you define it. It’s generally defined in populations as 0.2 percent. A study from Shanghai, China, said that 10 percent of women get it or are hospitalized for it. Obviously anyone can get it, even a duchess.

Q.

What are the main symptoms and how is it different from regular morning sickness?

A.

The main signs are rapid weight loss and rapid dehydration, the inability to tolerate fluids, feeling lightheaded and weak, and persistent nausea and vomiting. It just doesn’t go away.

Q.

Are there risks or complications associated with H.G.?

A.

It used to be a major cause of death in women until the 1950s when they introduced IV fluids. There is a serious complication called Wernicke encephalopathy. It’s a serious neurological disorder that happens when you are not able to get enough thiamine (vitamin B-1), a vitamin that is needed for proper brain functioning. When it’s depleted you can get this serious neurological problem.

Wernicke encephalopathy is rare, but it would be preventable with a thiamine shot. If women come in with H.G., they shouldn’t just be treated with fluids, they need to have that thiamine shot. This complication typically leads to fetal death, and it’s serious for the mother too.

Q.

Are there long-term risks to the baby or the mother from H.G.?

A.

There is very little research on H.G. One paper that looked at extreme nausea and vomiting found that children had more attention problems and difficulty in task persistence at ages 5 and 12. We found an increased risk of preterm labor and preterm birth due to H.G.

We need to do more studies, and we are following up on these women. We’re running a huge study to identify the genes and risk factors involved. About 30 percent of women had a mother who had it, and 20 percent had a sister who had it. We’re looking for the genes, and hopefully from that we can find the cause. Now it’s treated with medications that are developed to treat the symptoms but not to treat the cause.

Two major studies just came out the past couple years that showed an increased risk of preterm birth in H.G. But the majority of babies are fine.

Q.

Does the onset of H.G. predict whether a woman is carrying a boy or girl?

A.

It occurs for both male and female fetuses, but is more common in women carrying female fetuses.

Q.

Is a woman at risk for it in a second pregnancy if she gets it in the first?

A.

Yes, the recurrence risk is upwards of 80 percent. There is a study that says it’s more common in first pregnancies, but I think a lot of women don’t have a second pregnancy after having it. It’s bad enough that women decide not to have another baby, or to adopt or find another way.

Q.

Why is raising awareness so important given that this is a temporary condition?

A.

It’s not necessarily a temporary condition. There are long-term effects to the fetus possibly, and there are long-term effects to the women. We also have an article on post-traumatic stress following pregnancies. When you’re suffering day after day at a time when you know nutrition is so important for your baby, its very traumatic for women. Even the medicines that help, they don’t cure it.

Also, there are a lot of misconceptions about it. A lot of women are treated really badly. They’re treated like they’re faking it or that they just don’t want their child. We have a lot of women who have lost pregnancy after pregnancy, or who had abortions because they just couldn’t tolerate it. There needs to be more awareness. There needs to be funding for research so women won’t be treated like this is all in their head, and the fact that the duchess has it is going to help.

Q.

What was your own experience with H.G.?

A.

That’s why I’m so motivated. I had H.G. in two pregnancies. In my first pregnancy, I had a healthy baby boy. In the second case I lost the baby at 15 weeks. I don’t have it in my family, but I wanted to see if it was genetic since I’m a geneticist. We started on a genetic and epigenetic study we’re doing now. We’re going to find the cause, we’re getting there, but it’s really good to have awareness like this, although I feel terrible for the duchess.

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