Caitlin Dean: Dying To Become A Mother

Caitlin Dean is the chair of UK charity Pregnancy Sickness Support.  This piece was originally published in the Huffington Post. 

Mother’s Day can be a particularly big celebration for women who struggled to have children and a sad day for those who desperately want to be a mother but are unable. When we think about the challenges some women face in becoming a mother it is generally fertility issues that spring to mind and invoke sympathy among our peers. But for many women conceiving is the easy part… it is surviving pregnancy that can prove the hardest.

Hyperemesis Gravidarum (HG) is a serious complication of pregnancy in which women experience extreme levels of nausea and vomiting not just for days or even weeks but for months on end. Unlike “morning sickness” which we all know to be a normal, if rather unpleasant, symptom of pregnancy, HG can be so extreme it is commonly life changing for entire families – and can be life threatening to the mother. Not only does the sickness lead to dehydration, malnutrition and a host of other physical symptoms, but the mental health impact can be profound.

Sadly, for many women, not only are the symptoms themselves traumatic and depressing but the stigma and lack of understanding about HG can be the most distressing part. It’s not uncommon for women to be told it is all in their head or that they are making a fuss! Women can lose their jobs, home and even their families over it and so it’s not surprising to hear that many women resort to terminating their wanted and tried-for baby.

But it hasn’t always been this way. Historically, HG was taken very seriously as most women with it died in early pregnancy. The only treatment then was to perform an abortion or both mum and baby would perish; although in those days abortion itself was a seriously risky procedure so most did not survive anyway. Medical developments such as IV fluids and anti-sickness medication were therefore very welcome and the death rate from HG dropped rapidly. But they developed at the same time as Freudian psychoanalytic theory and suddenly HG was “all in her head”, “an emotional rejection of their fetus” or “signs of an abusive marriage”. Women were subjected to horrific treatments of isolation and interrogation. Their sick bowls were removed and they had to clear up their own vomit. Incredibly, treatments like this were still occurring in Europe in this century!

Thankfully, things have improved recently and with the introduction of new guidelines from the Royal College of Obstetricians and Gynaecologists (ROCG) last year, many hospitals in the UK are now treating women in dedicated HG Day Units and following protocols. Far from the days of accusation and blame it is a recognised condition with its own treatment pathways and a charity to refer women to for support. Surely then everything is fine for women with HG? Not quite! Research published this month explored and compared the experiences of women treated in both hospital wards and day unit settings over the last two years and, although there was a definite improvement in the care received in day units and a 50% reduction in the number of days needed in hospital, women were still being woefully ill-treated in many places. Of eleven women who had terminated their pregnancies only one had been given all the available treatments, two had received only the very basic first line treatments and one had been given no anti-sickness medication at all. Women may not often be accused of mentally rejecting their baby any more but they still have accusations levelled at them such as one women in the research reported “I was told [the medication] would give me a deformed baby and I would regret it by a nurse in a day unit”.

As Dr Rebecca Painter, gynaecologist and maternal fetal medicine researcher in The Netherlands, has said, “HG is just emerging from the dark ages of Freudian misunderstanding. HG presents a huge burden for the small group of women who develop it, and yet we don’t understand what causes it, or what presents the best care. In fact, we haven’t yet reached agreement on what HG is!”

The reality is we don’t yet have a cure for hyperemesis gravidarum and most of the medications, while safe, are not particularly effective for many women; it’s a case of controlling the symptoms at a manageable level and as Dr Painter suggests research efforts are hampered by a lack of basic definition. But in the meantime, care should focus on support and managing side effects like dehydration and starvation, which we know from other research can actually harm the baby yet is often underappreciated or people just don’t realise. Such misinformation further adds to the lack of informed consent that is happening. If a woman is told by her doctor that the medication “may” cause harm and that not taking medication doesn’t carry any risks, “baby will take what it needs”, then her consent or refusal to treatment is based on incorrect information and far from informed. Across the participants in the survey only 34% of women felt they had been given the information necessary to make informed decisions and many reported having to find information out for themselves or educated the staff about the condition. Given that the participants were disproportionally from higher socioeconomic and educated backgrounds that is a deeply concerning finding.

Ironically the areas of care and treatment which are currently so problematic for women with HG highlighted in this research, namely staff knowledge and understanding, care and compassion and information to make informed decisions, are actually the areas most easy to improve. As important as the development of new treatments is, professional and public education is far more achievable in the immediate future and could potentially have a huge impact.

The last few years has seen a massive revival of interest in HG thanks to the efforts of a handful of international researchers, some of whom have suffered themselves. There is now cutting edge genetic research looking into the cause of HG, innovative treatments being developed to reduce the symptoms and impacts, longitudinal studies looking at the long term impact of HG and women’s voices are finally being heard.

In October 2017 International researchers from across the globe are coming together to further their efforts, showcase their work and teach the “on the ground” staff how to care for and treat this complex condition. The conference, which is a collaboration between the British Pregnancy Advisory Service, Pregnancy Sickness Support and Plymouth University, will be an for healthcare professionals to get involved in research design and agenda setting, and help to spread awareness of available treatments and change attitudes towards a serious, life threatening condition for expectant mothers that is still too readily dismissed.

Ultimately, we don’t yet have a cure for HG, and we still have a long way to go to breakdown all the stigmas and difficulties women experience in accessing treatment. But in the meantime every individual can do their bit for these mothers to be who want above all to survive their pregnancy and become a mother – because compassion and validation is surely not too much to ask for a woman with a life threatening illness.