‘I was like, I don’t know how sick you have to be, but I am pretty sure I’m there’

The mere mention, never mind smell or taste, of certain foods was sometimes enough to send Aimée Banks (34) staggering to the bathroom during the first trimester and beyond of her current pregnancy.

She and her partner, Andy Munnelly, got to enjoy only “a brief honeymoon of finding out” that they were expecting their first child before crippling nausea hit Banks all of a sudden one Sunday afternoon, about five weeks into the pregnancy.

“I would have a lot of dry retching – essentially going through all the motions of vomiting but not being able to, and the nausea would last day and night,” says Aimée, who lives with Andy in Killester, Dublin, and is almost 19 weeks’ pregnant at time of speaking. “If I managed to get to sleep, I would be woken up by the nausea not long afterwards.”

[ What you need to know about hyperemesis gravidarum ]

Her GP was helpful, recommending she start on the anti-sickness medication Cariban (a brand name for doxylamine/pyridoxine). However, it takes two to three weeks to take effect, and within days of starting it, Banks felt so ill she went to the emergency department (ED) of the National Maternity Hospital (NMH), Holles Street.

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“Unfortunately, I didn’t have a great experience there.” She was told nausea and vomiting was a part of pregnancy and, basically, to get on with it. As she had been able to get the odd cracker down, she was advised she wasn’t sick enough for a specialist clinic that the NMH runs for women with hyperemesis gravidarum, an extreme level of nausea and vomiting that affects just 1 to 3 per cent of pregnant women.

“I was like, I don’t know how sick you have to be, but I am pretty sure I’m there,” recalls Aimée, who was sent away with two medications, but they didn’t agree with her and the nausea progressed to vomiting several times a day. Just rolling over in bed was enough to trigger it.

“There were a few days where I was on a diet almost exclusively of Lucozade and plain rice. But you get sick on that so many times, you go off that, and have to try to find something else. It got to the point where there was a period of two days where I couldn’t keep anything down at all.”

So many women suffer at home, not knowing what hyperemesis is, or have gone to the GP and got an anti-sickness medication which wasn’t every effective

—  Jean Doherty, research midwife

She had been looking forward to getting pregnant, but was left sitting wondering, “am I going to be able to do this? That was a horrible place to be in, because it was so far away from what I think everyone would imagine pregnancy to be.”

[ It took me two children and three years of damaged mental wellbeing before I reconciled with mothering ]

Banks was bringing up blood and lost 4kg (9lb) in weight, but doctors still did not seem too worried on her second visit to the ED. However, “thankfully”, she was referred to the hyperemesis clinic and has had “wonderful care” from there ever since.

On her first visit to this Iris clinic (named both after the flower and as an acronym for: IV fluids, Rest, Insight and Support), she was told she was so dehydrated she needed to be put on fluids immediately. There was concern about her weight loss and a high level of ketones in her urine. A dietitian talked her through a plan of action, and staff also reassured her that her condition was as every bit bad as she felt it to be.

“It made you stop feeling silly for feeling so sick,” says Banks of her treatment. Hearing the stories of some of the other women attending also reiterated to her that “this isn’t in my head”. She reckons her partner was as relieved as she was when she came out of the clinic and told him it was going to help her. “He felt, in his own words ‘utterly useless’.” While he could do everything around the house and walk the dog, “there was nothing he could do to make me feel better”.

The multidisciplinary Iris clinic “provides much-needed validation for a medical condition with little understanding from the general public or many healthcare professionals”, a recently published research paper concludes. Its lead author, NMH research midwife Jean Doherty, believes the biggest issue around hyperemesis is people, including patients themselves, thinking the problem is just morning sickness “rather than an actual medical condition, which it is”.

[ State refunds Viagra costs but women must pay for severe pregnancy sickness drugs, Seanad told ]

With hyperemesis, a pregnant woman can’t keep down enough fluids to prevent clinical dehydration or enough food to keep herself and her foetus nourished, and is likely to lose weight very quickly. The condition will start having an impact on the baby if it is not managed and persists.

“A lot of other symptoms are not talked about at all – drowsiness, dizziness, poor sleep, and psychologically the impact can really be quite severe,” says Doherty. Women can feel very depressed, anxious and isolated, as hyperemesis is very detrimental to day-to-day functioning, affecting work, socialising and relationships. A sense that the mental impact is even worse than the physical impact has come out strongly in research interviews with women attending the clinic.

“It was very surprising, and even upsetting for want of a better word, to see that these women are struggling so much. It impacts every single aspect of their lives,” she says. The lack of validation about the severity of the condition, even from themselves, meant many felt they had to try to keep working. “It’s like these women didn’t feel it sounded ‘big enough’ to limit hours.”

Before the research, visits by members of the NMH’s mental health team to the weekly Iris clinic were hit-and-miss, but they now ensure there is somebody there every week. They may conduct a mindfulness session or lead group chats about feelings, during which they may spot women who need one-to-one consultations.

Nearly all the 10 women interviewed in depth for the research, which is published in the international midwifery journal Women and Birth, had very supportive partners. Only one of the fathers-to-be seemed to have the “it’s only morning sickness – get over it” attitude.

“Once you live with somebody who has it, you completely understand it,” suggests Doherty. “That understanding comes very quickly.” The Princess of Wales, Kate Middleton, has also been “great PR for hyperemesis”, with media coverage of her experiencing it on all three pregnancies.

Before the opening of the Iris clinic in mid-2020, the first of its kind in an Irish maternity unit, women contacting the NMH about symptoms of hyperemesis would be told to come in to the ED. They would probably already have been to a GP who may or may not have prescribed an anti-sickness medication.

People who might have originally wanted more than one child are very stressed at the thought of going through it again, especially if you were not supported during your first pregnancy

—  Caoileann Appleby, volunteer, Hyperemesis Ireland

In the ED, the woman would get fluids and an anti-sickness injection, sometimes needing to stay overnight. They would then be sent home with a prescription. But, typically, women would have to go through this several times over the course of their pregnancy. There would be no follow-up, no proper pathway, just ad hoc treatment to meet the immediate need, says Doherty.

[ Breda O’Brien: I can’t remember labour but I’ll never forget the vomiting ]

Now, a woman with symptoms of hyperemesis should be referred to the Iris clinic on a first visit to the NMH’s ED or after an appointment elsewhere in the hospital. There they will be assessed by a midwife and a dietitian, who will advise on what fluids/nutrition they need. Comfortable reclining chairs are provided, as the infusion takes several hours because “if it’s too fast they will feel sicker”. The women are also given a comfort pack and snack pack containing foods such as fruit salad, smoothies and salty crackers that are popular and commonly tolerated by sufferers. They can relax and chat or try to get some sleep, or some may have to work from there.

There are four to five new referrals a week to the Iris clinic, but the majority don’t need to attend regularly. In their case, advice and medication may be enough to control the symptoms, while others need to come in every week. Day appointments for the administration of IV fluids will also be arranged in between if necessary.

Currently, there is space for only six women at a time in the clinic, which does not meet the demand. One of the recommendations of the research, which has highlighted how the clinic has reduced admissions to the hospital’s ED and the necessity for overnight stays “quite significantly”, is that the service be expanded. A second weekly clinic is likely to be added within the next few months, according to Doherty.

She hopes the ongoing research will help to raise awareness. Currently, there is a gap for most women between onset of symptoms and their booking visit at a maternity hospital. This needs to be filled with recognition of hyperemesis and knowledge of where to go for help, she says.

“So many women suffer at home, not knowing what hyperemesis is, or have gone to the GP and got an anti-sickness medication which wasn’t every effective. It is very much trial and error with hyperemesis. A lot of women are on a concoction of different medications.”

Banks is still on Cariban, although, fortunately for her, the hyperemesis began to subside as she progressed through her pregnancy. She found weeks nine to 12 were her “absolute worst”, but, from then on, the good days started to increase in number and the bad days of being unable to move without being sick occurred a little less frequently. “By 15 weeks, I think I went to the shop on my own for the first time in three and a half months.”

She tried to come off the medication a couple of weeks ago, but the symptoms began to come back, so she resumed taking it. However, the cost, at about €200 a month, has shocked her, particularly having come to Dublin from the UK where any prescription needed during the maternity period is free.

Access to Cariban has been the subject of a concerted campaign by Hyperemesis Ireland, a voluntary peer support organisation set up in 2016 by a group of women who had experienced the condition. Although Cariban is the first-line drug treatment recommended in the Royal College of Physicians of Ireland (RCPI) clinical guidelines for the treatment of hyperemesis, it is not yet licensed here and has only been covered for reimbursement under the medical card and drugs payment scheme since last January. It still requires a prescription from a consultant, not just a GP, as well as other paperwork.

Public maternity patients generally don’t have easy and quick access to a consultant, points out Caoileann Appleby, a volunteer with Hyperemesis Ireland. She had the condition when pregnant in 2019 with her first daughter. While Cariban helped to alleviate it for her that time, it didn’t work during the pregnancy with her second daughter and she had to try other medications.

Women, and even GPs who are not well informed about hyperemesis, can be very wary about the much-needed medication. The disastrous consequences of using Thalidomide to treat morning sickness in the late 1950s and early 1960s is still within living memory, but drug testing and regulation has improved vastly since then. While all medications come with some sort of risk, not taking anything for hyperemesis is not a risk-free option either, Appleby points out.

[ Check-up: hyperemesis gravidarum ]

Hyperemesis Ireland would like to see the Iris clinic initiative repeated in other maternity units, or at least “more coherent, wraparound care” provided, she says. They hear how affected women struggle to get consistent care and, even if encountering a hospital clinician who takes it seriously, may be left to sit in ED for hours on a chair with a drip. The after-effects of hyperemesis may also go undiagnosed, she says. US research suggests that a much higher rate of postnatal depression and post-traumatic stress comes with the disorder. The frequency of vomiting and retching can leave a woman with damaged teeth or a tear in the lining of her oesophagus.

“People who might have originally wanted more than one child are very stressed at the thought of going through it again, especially if you were not supported during your first pregnancy,” Appleby adds.

At least Banks has been able to benefit from the care at the Iris clinic and is feeling much better now she is midway through her pregnancy.

“My energy levels are not back to anywhere near where they were,” she adds, “but I have recovered enough to be able to scope out gyms and figure out how I can rebuild my strength.”