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Don't suffer alone ... help is at hand for hyperemesis gravidarum sufferers.

English novelist Charlotte Bronte died an awful death in 1855. Faint, exhausted and a slave to incessant nausea and vomiting for months, the fragile writer was unable to stomach food and water despite wearily trying to summon strength.

Dehydrated and delirious, with no modern medicine to save her, Bronte died while four months' pregnant from the effects of an illness still inflicting misery on pregnant women - hyperemesis gravidarum - excessive, persistent vomiting and nausea which can linger for an entire pregnancy. It drives some women to terminate.

"A wren would have starved on what she ate during those last six weeks," a friend of Bronte's is reported to have said.

Left untreated, hyperemesis patients lose weight because they are unable to eat or drink without vomiting.

Sydney GP and sufferer Dr Melinda Griffiths likens the feeling to a continuing bout of gastroenteritis. It's like being on the cusp of vomiting, without respite.

"You can feel your mouth drooling, you feel really, really nauseous. You can't get comfortable. It feels like you're stuck at that point because even after a vomit you might get relief but if you do it will be short-lived. I felt well enough for five, 10 minutes and then it would come back. It just felt like being caught in that stage for week after week," Dr Griffiths says.

In 2010 women are usually spared the same deadly fate as Bronte thanks to intravenous fluids and anti-nausea medication, but nobody really knows why the condition afflicts up to 3 per cent of pregnant women.

It has been suggested heightened sensitivity to the pregnancy hormone human chorionic gonadotrophin (hCG) in the blood may be the culprit. While there are many unknowns, there are some risk factors - those who have had a previous hyperemesis pregnancy and those carrying twins. Its recurrence rate has been estimated at up to 95 per cent.

A University of Southern California geneticist, Harvard PhD graduate and former sufferer, Dr Marlena Fejzo, thinks genes play a part.

Dr Fejzo's research indicates women whose mothers had hyperemesis are 30 per cent more likely to get it, while the rate is 20 per cent for those whose sisters experienced it.

"There's kind of a misconception about genetics that people think I'm just doing this so we can have a genetic test for it but that's not the reason,'' Dr Fejzo says. ''That might come out of this but the real reason is once we find the predisposing genes, we'll have an idea of what the biological cause is.''

Dr Griffiths vomited blood while sick for 10 weeks with hyperemesis, with massive weight loss. She recovered well and has a healthy child. But as soon as she told others of her plight, stories of terminations emerged.

"When I was really sick I had two close colleagues who were really lovely and sympathetic [about my illness] and told me they actually ended up terminating because they felt they couldn't continue, it just felt so awful," Dr Griffiths says.

"I don't think I can put figures on it [the number of women terminating] but I certainly think it's a reality."

About 15 per cent of women sufferers surveyed by the Hyperemesis Education and Research Foundation said they had at least one termination due to the condition.

Dr Griffiths, who was admitted to hospital three times while pregnant and says she was depressed until the illness passed, thinks the issue of severe nausea and vomiting in pregnancy (NVP) is trivialised. She says concerned pregnant women should seek medical attention.

"I wasn't able to work … I took to my bed. My husband would come home at the end of the day, empty the vomit bowls and cook me food which inevitably I would vomit up again, he would help me down to the shower in the morning. I think I saw two friends in that time because I was absolutely overwhelmed with what was happening and mortified that this very much wanted pregnancy had turned me into this vomiting person who wasn't able to do her job or communicate properly with anybody," she says.

Sydney mother-of-two Tegan Hole had terrible nausea and vomiting throughout her pregnancies but says she tried to play it down because she felt it was part of having children and that she had to be stoic and not whinge.

"I think the main reasons I had really bad days were dehydration and exhaustion," Hole says, likening it to constant motion sickness.

"Emotionally I was a wreck. I had no energy for myself, my partner or, in my last case, my child. I felt I was not providing anyone with what was needed and subsequently I suspect I was possibly depressed."

Malavika Vaikunta, of Bellevue Hill, who is enduring hyperemesis for the third time and is due to give birth next month, says the illness forced her to quit her job while pregnant.

"Nine months is a long time to be controlled by something that should be nothing but a pleasurable, joyous experience," she says.

"Basic things like taking a shower, bathing my child, washing my hair etc felt like a monumental challenge at the peak of my illness. Walking into grocery stores, past restaurants or watching a food ad on TV would trigger a gagging reaction. I just wanted to sleep all the time in a dark room and wake one day and have the baby. It is a very debilitating feeling. On some days I felt like the ground was slipping away beneath my feet."

Dr Debra Kennedy, a clinical geneticist and director of MotherSafe, a service for those concerned about exposures during pregnancy and breastfeeding, says women's attitudes that pregnancy must be "toughed out" are often compounded by unsympathetic health professionals who are reluctant to suggest medication.

MotherSafe recommends women start treatment with a combination of the drug Doxylamine - which helps with sleep - and vitamin B6 because it is considered safe.

But Sydney obstetrician Dr Siobhan Lee says "the great silently suffering majority" do not seek medical help and it angers her that hyperemesis and nausea and vomiting in pregnancy "are brushed off as transient, inconsequential conditions except when someone requires hospital admission because they cause a lot of morbidity that is avoidable".

"I believe that there is complacency within the community regarding NVP and HG and an attitude that 'it is just part of pregnancy so deal with it'. That attitude is unhelpful and in fact harmful because it prevents many women seeking treatment," Dr Lee says.

Not all treatment involves medication, she says, with acupuncture, sleep, regular snacks, vitamin B6 and ginger all shown to help.

Clinical nutritionist Tabitha McIntosh concurs with Dr Lee, saying she often treats women with ginger root, vitamin B6 and chromium and recommends three-hourly protein snacks, as tolerated.

Dr Lee believes there is weight to the argument hyperemesis is genetic, as does obstetric physician Dr Sandra Lowe, who works at the Royal Hospital for Women and Prince of Wales Private Hospital and sees two or three hyperemesis patients each week.

Dr Lowe says prompt, aggressive treatment is often effective and can be given safely in early pregnancy. At Royal Hospital for Women, treatment includes medications and intravenous fluids at a day-stay unit. Women should be aware much can be done to reduce their suffering and prevent symptoms in future, she says.

"I think one of the hardest aspects of having hyperemesis is being so out of control," Dr Lowe says. "You can't manage your own symptoms. You can't eat, you can't drink. You get all those negative thoughts about the pregnancy and the baby. The way we manage this is to support women and place control back in the women's hands."

Emergency doctors and obstetricians need to be better educated about hyperemesis and women need to be more proactive in recognising when they need help, she says.

"Women are often told to just put up with it, it's just part of being pregnant,'' Dr Lowe says. ''Education is needed to improve both recognition and management of this poorly understood condition. It certainly doesn't help to blame the woman."

At Royal Prince Alfred Hospital, clinical practice guidelines have been introduced for treating pregnant women who present to the emergency department with severe nausea and vomiting.

Emergency staff specialist Dr Kendall Bein says the emergency department has a short-stay admissions unit doctors can use for hyperemesis, and the new approach gives women back some control over their illness.

"We have an approach which is based more on the principle of trying to keep them well in the community. We'd rather have them able to come in … be treated quickly and effectively before they get very unwell and be able to go home within a few hours well again," Dr Bein says.

 

70%

of pregnant women are affected by nausea and vomiting

 

0.3%-3%

of pregnant women experience HG

 

5%

of body weight - the minimum weight loss of women with HG

 

16 weeks

the gestation period when HG usually settles down in most women. A small minority can experience severe symptoms up until delivery

 

15.2%

of women sufferers surveyed in a Hyperemesis Education and Research Foundation survey said they had had at least one termination due to HG

 

95%

the recurrence rate for HG

 

Charlotte Bronte

(1816- 1855)

''She was attacked by new sensations of perpetual nausea, and ever-recurring faintness. After this … had lasted for some time, she yielded to [her husband] Mr Nicholl's wish that a doctor should be sent for. He came, and assigned a natural cause for her miserable indisposition; a little patience, and all would go right. She who was ever patient in illness, tried hard to bear up and bear on. But the dreadful sickness increased and increased, till the very sight of food occasioned nausea …

Martha tenderly waited on her mistress, and from time to time tried to cheer her with the thought of the baby that was coming. "I dare say I shall be glad sometime," she would say; "but I am so ill - so weary -" Then she took to her bed, too weak to sit up … Long days and longer nights went by; still the same relentless nausea and faintness … About the third week in March there was a change; a low wandering delirium came on; and in it she begged constantly for food … She swallowed eagerly now; but it was too late.''

 

From The Life of Charlotte Bronte, written by her friend Elizabeth Gaskell


For more on parenting and pregnancy see essentialbaby.com.au