Why are pregnant women NOT being treated for hyperemesis gravidarum?

Why are pregnant women still NOT being treated for hyperemesis gravidarum? The extreme vomiting condition that hit Kate Middleton and drove one expectant mother to despair

It is a story that’s as shocking as it is tragic. A young primary school teacher, battling an extreme sickness condition that can severely affect expectant mothers, driven to the depths of despair. And then, the most harrowing of conclusions.

In November, Jessica Cronshaw, just 26 years old – and 28 weeks pregnant – died. The exact details of the case will now be the subject of a coroner’s inquest, which will determine the cause.

Yet her anguished family, still reeling from their almost incomprehensible loss, claim that her illness was not properly treated and this contributed to her mental health deteriorating.

‘Jessica was so happy to find out she was pregnant. It wasn’t planned but we were thrilled. She’d dreamed of a large family,’ says her partner, Eddie Leck, 30, who lived with her in Wigan.

Jessica Cronshaw (pictured), 26, was 28 weeks and five days pregnant with her daughter, Elsie, when she and Elsie died earlier this month after Jess had been suffering with hyperemesis gravidarum (HG)

The condition is perhaps best known for affecting Catherine (above in April 2013), Princess of Wales, who was hospitalised for several days in 2013 while pregnant with her first child, Prince George

Her cousin, Steffi Scott-Miller, 28, says Jessica had no history of mental health problems before her pregnancy, describing her as ‘driven, ambitious’ woman, who ‘lit up the room with her sense of humour’.

But just weeks into her pregnancy she began vomiting relentlessly, felt nauseous ‘at the slightest movement’ and ‘couldn’t keep anything down’. Her mother Susan, 55, says: ‘She couldn’t get out of bed or make it down the stairs until about month four, let alone work.’

What is hyperemesis gravidarum? 

Hyperemesis gravidarum (HG) is a condition that causes persistent and excessive vomiting during pregnancy.

Sufferers can be sick lots of times every day and be unable to keep food or water down, impacting their daily life. 

It is unlikely to harm the baby, but if it causes a women to lose weight during pregnancy there is an increased risk their baby will have a low birth weight. 

It is different to sickness during pregnancy — often called morning sickness — which is normal and affects eight in 10 pregnant women. For most, this stops or improves around weeks 16 to 20.

Meanwhile, HG may not get better by this point and can last until the baby is born. 

Symptoms of HG include prolonged and severe nausea and vomiting, being dehydrated, weight loss and low blood pressure.

Being dehydrated raises the risk of having a blood clot — deep vein thrombosis — but this is rare. 

It is not clear what causes the condition, or why some women get it and others don’t. 

Some experts think it may be linked to the changing hormones in the body that occurs during pregnancy. 

And there is some evidence that it runs in families and women who suffered it during their first pregnancy are more likely to have in any subsequent pregnancies.

Women suffering from HG can be given medicine to improve their symptoms, such as anti-sickness drugs, vitamins B6 and B12 and steroids.

Some women have to be admitted to hospital if their nausea cannot be controlled with medicines at home.

They may require fluids and anti-sickness drugs to be administered through an IV. 

Source: NHS

At nine weeks, Susan, a care worker, took Jessica to a hospital antenatal appointment, where she was diagnosed with extreme pregnancy sickness, known medically as hyperemesis gravidarum.

The condition is perhaps best known for affecting Catherine, Princess of Wales, who was hospitalised for several days in 2013 while pregnant with her first child, Prince George. She also suffered in her pregnancies with Princess Charlotte and Prince Louis.

Jessica was sent home on the day of her diagnosis with anti-sickness medication, after receiving rehydration treatment via a drip, but she continued to suffer. Susan says: ‘She’d lie on the sofa barely able to eat, looking gaunt. She didn’t want anyone to see her. Within a few months she’d become a different person. Withdrawn and wanting to hide away from the world.’

The family say that at numerous times throughout her pregnancy, doctors told Jessica: ‘It’s just a bit of morning sickness.’ On two occasions she was sent home from hospital, despite explaining that she still felt ‘like she was dying’. Susan says: ‘She felt that people weren’t listening to her.’

As disturbing as this case is, experts warn that the extreme symptoms that Jessica complained of are not unheard of.

‘A number of women who call our helpline feel so awful they express suicidal thoughts,’ says researcher Dr Caitlin Dean, of the charity Pregnancy Sickness Support which gives advice to women suffering from hyperemesis gravidarum.

‘We’ve had to call an ambulance for individuals because they’ve disclosed that they’ve taken an overdose. It’s not that uncommon.’

Dr Dean adds: ‘It is not just the severity of the condition but the fact that women are being told that there’s nothing wrong with them, that it’s just morning sickness and they should be glad or grateful for being pregnant. And yet they have this condition that makes them feel like they’re dying.’

Speaking emotionally on The Mail on Sunday’s Medical Minefield podcast this week, one former sufferer said her symptoms were so bad ‘I felt like I didn’t want to be alive.’

Jessica Craner, a senior midwife from Salford, added: ‘It feels like there’s no escape from it. And the lack of understanding is really difficult. I never had depression before I became pregnant, and now that experience is a scar I will carry with me for ever.’

Meanwhile, other women have described similarly agonising symptoms in a report compiled by maternity experts at London’s St Thomas’ Hospital. One said: ‘I was vomiting blood. I can remember crying, saying I couldn’t cope much more, to which a nurse replied, ‘You should count yourself lucky – there’s people who can’t have babies at all.’ ‘ Another said: ‘You are too ill to get out of bed to make your children’s dinner or kiss them – you feel you need to save yourself to save them.’

Research by the same team found a quarter of women who suffer from hyperemesis gravidarum experience suicidal thoughts at some point in their pregnancy, while one in 20 regularly think about it.

She also suffered in her pregnancies with Princess Charlotte and Prince Louis. Pictured with Prince George in July 2013

These stories have emerged against a background of increasing maternal deaths in the UK, with the latest nationwide report showing a 20 per cent rise since 2017. The leading cause was suicide.

While about two-thirds of pregnant women experience morning sickness, only three per cent develop hyperemesis gravidarum. The condition is diagnosed when the vomiting has become so constant and severe that it has led to dehydration and significant weight loss.

It’s not fully understood what causes it, but changed hormones are thought to play a role.

Roughly 6,000 women a year in the UK suffer for the majority of their pregnancy. In these cases, and if left untreated, it can lead to malnutrition and dehydration, resulting in potentially fatal complications for mother and baby.

For the mother, this includes kidney and liver failure and sudden cardiac arrest. Meanwhile, the condition dramatically increases the risk of low birth weight, pre-term birth and neonatal death.

Scientists aren’t exactly sure what causes the condition, although research suggests it is sparked by a genetic fault that triggers a hormonal imbalance.

How this condition could predict your baby’s gender

Last year, researchers found those with extreme morning sickness may be less likely to give birth to sons.

According to New Scientist, one theory is the Trivers-Willard hypothesis which suggests when times are good, it is best to have a son.

However, in tough times, a daughter is safer for a mother to pass on her genes to as weaker males are less likely to succeed.

Given a third of pregnancies with HG result in miscarriage, this could help to explain why fewer boys are born to women with the condition, the study said. 

In 2015, a paper by experts at the University of California estimated that as many as one fifth of maternal deaths are related to hyperemesis gravidarum. However, figures are difficult to ascertain. The condition is rarely recorded on death certificates, and experts say doctors are often unaware that the condition can contribute to death.

While there are effective treatments, such as anti-sickness medication, experts say not enough women are getting access to them. In October 2015, a study of 5,000 hyperemesis gravidarum patients by King’s College London found that 41 per cent had not been offered medication.

It is indicative of a culture that Dr Dean calls ‘foetal-centric treatment’. She says: ‘GPs can be nervous about prescribing medicine in pregnancy due to a focus on potential harm to the baby.

‘It’s vital to look at the risks and benefits in relation to the mother’s health, as well as the baby’s.’

Some of this reticence, Dr Dean says, is rooted in the thalidomide scandal of the 1950s – when an untested morning sickness drug caused serious birth defects in thousands of children.

‘There’s a lot of fear around the use of any medication in pregnancy because of this,’ says Dr Dean, ‘but medical research has changed remarkably since then – drugs for hyperemesis, like all others, go through strict clinical trials.’

Pregnant women are concerned about harm to their child, but healthcare professionals are failing to reassure them, experts say.

‘When counselling, you have to explain that the benefit of the drug for the mother almost always outweighs the small and theoretical risk to the child,’ says Professor Catherine Nelson-Piercy, an obstetrics consultant at St Thomas’ Hospital. ‘For instance, there’s a slightly raised risk of cleft palate with one anti-sickness drug, but the increase is from seven per 10,000 to 11 per 10,000, and the problem can be reversed with an operation. Often healthcare professionals don’t explain this properly.’

One 2020 study found that 70 per cent of pregnant women believed taking any medicine would harm their unborn baby.

Campaigners say that, often, a hospital admission in which patients are rehydrated via a drip and supported to eat can stop the condition getting worse.

In 2015, a paper by experts at the University of California estimated that as many as one fifth of maternal deaths are related to hyperemesis gravidarum (stock image)

‘Simply helping someone to look after themselves and building up their strength so that they don’t feel so weak and can function,’ says Dr Dean.

‘But usually this requires a couple of days in hospital – and there’s less and less space available to do this, so women are just sent home.’

Prof Nelson-Piercy says that when women visit hospital asking for help, their condition is often ‘not taken seriously or properly managed’. One in five of the patients surveyed in the King’s College study described their experience of hospital care as ‘poor’.

As Jessica Cronshaw’s case shows, physical illness is only one of the challenges of this devastating condition. A 2020 study found nearly half of women with hyperemesis gravidarum suffer mental illness such as depression, compared with six per cent of expectant mothers without the condition.

Jessica’s family told The Mail on Sunday that they couldn’t recall if she’d been asked by her doctors about her mental health at any point during pregnancy. ‘Later on, when she was very down, we were surprised that no one commented on it,’ says her cousin, Steffi. ‘We felt the doctors must know best and let them lead the appointments. A lot of it seemed to be about positive reinforcement. They kept saying to Jessica, ‘You’re doing really well.’ They seemed to focus on the baby and her physical health.’

Some women with hyperemesis gravidarum opt for another tragic escape from the condition. Up to one in ten patients are so unwell they see no option but to terminate the pregnancy, according to a 2015 British Pregnancy Advisory Service report.

‘It is very common that a lot of very wanted, loved, tried-for babies are lost to the condition,’ says Dr Dean. ‘Women often say things along the lines of, ‘It was either me or the baby, or both of us.’ ‘

Dr Dean is calling for better education for trainee doctors and midwives. ‘Some universities still teach midwifery students that no medication at all is safe to take in pregnancy,’ she says. ‘We need greater public awareness of just how life destroying this condition can be, so healthcare professionals take it seriously.

‘We really appreciated the Princess of Wales sharing her story to raise the profile, but her experience of the illness will be vastly different than that of the average British woman.

‘Many of the women who call us say their job is on the line. How are they going to pay the bills if they’re off sick for months on end? How are they going to look after their other children if they can’t afford childcare?’

Meanwhile, Jessica’s Cronshaw’s family have found solace in fundraising for Pregnancy Sickness Support to help others who find themselves in similar situations, and have so far raised £15,000.

‘I know Jess had plans to raise awareness of the condition and raise money for the charity when she got better,’ says Steffi. ‘Sadly, that wasn’t to be. But at least we can do it for her – in her name.’

● To donate, visit justgiving.com/fundraising/jess-elsie. For support visit pregnancysicknesssupport.org.uk.

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