Everything You Need To Know About Hyperemesis Gravidarum
How is Ireland is handling the condition causing extreme sickness during pregnancy?
Sleeping on the bathroom floor, vomiting so much you burst blood vessels in your eyes, urinary incontinence, being unable to speak, smile, or hold your head up is just some of the suffering people with hyperemesis gravidarum experience. Also known as HG, hyperemesis gravidarum is a form of extreme nausea and sickness during pregnancy which affects around 2% of pregnant people.
Not to be confused with morning sickness, hyperemesis gravidarum often begins before the first 16 weeks of pregnancy and lasts throughout the entire pregnancy. Dehydration, malnutrition, kidney and liver dysfunction, oesophageal tears and dental problems are just some of the physical effects of the condition if left untreated.
In the Republic of Ireland, there are around 3000 hospital admissions per year for HG. As for the cause of HG, that is still somewhat of a mystery, while some experts had suggested that the condition was the result of changing hormone levels, new research, while still ongoing, suggests that it’s likely caused by genetics. Whatever the cause, pregnant people are suffering every day as a result of it.
Grace from Kilkenny was hospitalised eight times over the course of her second pregnancy. Her symptoms began during the same time she had covid while 17-weeks pregnant, and from there followed an agonising six months in and out of the hospital.
“On a few occasions I actually just drove myself to the hospital, I was so unwell and needed help. I had to give up work straight away and my condition affected my son too, who was two and a half at the time. I physically couldn’t mind him so myself and my husband had to rely on help from friends and family,” Grace explains. “Because of HG, I missed so many occasions. I missed my son’s birthday party. I missed my brother going to Australia, and countless other small celebrations, all because I was either in hospital or just too afraid to leave my house and not be close to the hospital if something happened.”
Treasa from Limerick has more experience than most with HG, as she experienced it during both of her pregnancies. What first started as slight nausea around week six of her first pregnancy went on to become a condition that consumed every moment, with hospitalisation the only respite she got from vomiting.
“On my second pregnancy, my HG was so bad that I had to move in with my parents again. I remember my mom giving me a Capri Sun to sip and I’d vomit it up. I remember asking my husband to just wet my lips with water, I was so dehydrated, all you want to do is to be able to drink fluids but it’s just not possible. I spent nights asleep in the bathroom, with my head resting on the toilet seat. I couldn’t sleep anywhere else, because the nausea and vomiting was constant.”
Aside from the horrific physical side effects of the condition, the mental toll it takes on pregnant people is another part of its challenge. “HG is a very mentally and physically challenging condition. You feel so alone with it. I felt so alone for six months,” says Grace.
How is Ireland tackling this?
Sadly, there are many frustrations felt around the government’s approach, or lack thereof, to helping. A first-line medication called Cariban is available to those with the condition. However, getting access to that medication has many hurdles and barriers.
“Cariban is an expensive medication, approximately €200 a month or more, and prior to 2023 it was not covered under the medical card and Drugs Payments Scheme,” Caoileann Appleby from Hyperemesis Ireland explains. “We have been campaigning on this issue since 2021; in January partial coverage was introduced but it discriminates against patients in public maternity care, and Cariban is now most inaccessible for those least able to afford it.”
In September 2022, Health Minister Stephen Donnelly announced that €32.2m funding would be provided in the 2023 budget for Women’s Health, including reimbursement for Cariban. Sadly, it hasn’t been as straightforward as people hoped, with access to the drug only reimbursable under the Community Drug Scheme if it is prescribed by a consultant obstetrician.
Both Grace and Treasa were financially responsible for their own medication, adding more of a burden to an already distressing time. “I was out of work on illness benefit at the time, and my prescription for medication was €4.10 a tablet – I often needed 3 a day and most of the time I would vomit them back up before they even had the chance to settle and be effective,” Treasa shares.
What can Ireland do better?
Support for those dealing with hyperemesis gravidarum should be high on the agenda for the government. Hyperemesis Ireland outlined the ways they believe Ireland can do better. First and foremost, easier access to medication should take priority.
Caoileann explains: “The HSE needs to improve access to the first-line medication for HG, Cariban. In our own survey, public patients are less likely to get access to Cariban compared to private patients, with over one-third waiting more than two weeks to get this safe, first-line medication that they should be able to access from their GP. Therefore increasing both their own suffering but also the burden on the HSE in treating complications.”
Secondly, support for new guidelines on HG needs to be implemented, “The current HSE guidelines on HG are from 2018. They are being updated at the moment; once they are published early next year, we would love to see an integrated healthcare provider education programme in place to improve access to proactive and evidence-based care in every maternity unit and GP practice.”
Lastly, access to social welfare support needs to be established. “There is a lot that could be done within existing social welfare structures to support families living with HG. The new statutory sick pay is only for 3 days – any more is at the discretion of the employer. If their partner has to leave work to care for them and their children, the partner is not entitled to Carer’s Allowance as that is only for conditions lasting 12 months or longer.”
Getting the help you need
“The first port of call is their GP. GPs can prescribe all the first-, second- and third-line medication options in the HSE guidelines,” says Caoileann. “A GP can also help assess if hospital treatment is needed and refer in if so. Their maternity hospital is next if the medications aren’t working well enough and/or they need IV rehydration. The hospital can also offer higher doses or injectable medications that may not be available from GPs. Termination of pregnancy is also an option for HG. In Ireland, however, it can be tricky as termination is most accessible at less than 12 weeks of pregnancy. We are not aware of any statistics or research on terminations for HG in the Republic of Ireland, whether <12 or 12+ weeks.”
Hyperemesis Ireland offers a private online support group for HG patients, people who are suffering and for those have dealt with it. Their website, hyperemesis.ie also provides information and advice from those experiencing hyperemesis gravidarum.
This article first appeared in the October 2023 issue of STELLAR magazine.