Some 25 years ago, two pregnant women asked me the same question within weeks of each other. This is perhaps not that remarkable a statement from a midwife. We do, after all, answer questions and offer information for a living. But the question struck me because I hadn’t been asked it before. Nor had I thought to ask it myself.
The question was: “Do I really need RhoGAM after I have my baby, and what’s the chance of a problem if I decline?”
Let me offer, if I may, a bit of context. At the time, I was a British midwife in the US. I was a graduate of a midwifery degree program based in Oxford, England. This is an important fact because Oxford was, at the time, one of the key hubs of evidence-based medicine. For that and other reasons, there had been a significant emphasis in my education on looking at the evidence for different interventions. My student colleagues and I had spent four years looking at the evidence on risk assessment, CTGs (electronic fetal monitoring), vitamin K, and all kinds of other things that were offered to women and families. Most often, I discovered, the evidence tended to support what we were beginning to call the midwifery model of care (Davis-Floyd 2001). That is, birth works well the majority of the time, and it’s generally best not to interfere. The caveat is that things do go awry now and again, so vigilance and emergency skills are vital. If you’re working in homebirth, you’ll need a car full of equipment as well. We also soon learned that evidence supported a long-held concern: that intervention can sometimes be the cause of problems.
A Personal Research Journey
Those two women’s questions about RhoGAM (or, as we call it elsewhere in the world, Anti-D) were intriguing to me. I did a poor job of answering them at the time. That was because, no matter how hard I looked, there was very little evidence to be found on this topic. What little I could find was produced by the companies making Anti-D and it merely reiterated that this was a marvellous and much-needed medicine and every Rh-negative woman should have it after the birth of an Rh-positive baby. A bit of hope came in the form of a couple of intriguing articles by Penny Harmon (1987) and Ina May (Gaskin 1989) in Midwifery Today and The Birth Gazette. But, like me, they had realised that there existed far more questions than answers.
I was fascinated by the difference between the questions that women and midwives were asking and the information that was being given out. So, when I found myself beginning a Master’s degree a few months later, anti-D was the topic I decided I wanted to research. I searched the literature and I quickly realised that, although anti-D was effective, the data showed that most women in the control groups weren’t becoming sensitised even without it. The figures vary a bit depending on which paper or review you look at. That’s partly because the data are of variable quality and there’s no high-quality information on this. But, we think, from the data we have, that around one in seven Rh-negative women who give birth to a Rh-positive baby will become sensitised to the Rh antigen if they don’t have anti-D after they give birth (Wickham 2021).
That’s certainly a higher chance of having a problem than women and families face in many other situations where interventions are debated. The risk of becoming sensitised without having postnatal anti-D is, for instance, many times higher than the chance of a baby having a bleeding problem if it doesn’t have vitamin K. It’s far higher than the even rarer event of a healthy, term baby being at risk from Group B Strep related mortality if their mother declines antibiotics in labour. But it still means that six of every seven Rh-negative women who have postnatal anti-D after the birth of a Rh-positive baby are receiving a medicine made from blood that they don’t need and that they won’t benefit from.
Weighing the Decision
The weighing of pros and cons becomes trickier when we consider that anti-D is now offered in other situations, as well. These include situations in which someone experiences early fetal loss or a potentially sensitising event (PSE) in pregnancy. A PSE might be something like an invasive medical procedure or a car accident. It’s a situation where a bit of the baby’s blood may have entered the maternal bloodstream. Many high-income countries also now offer anti-D routinely in pregnancy, in the hope of covering the small number of women who become sensitised without any sign of a sensitising event. The chance of sensitisation in these situations is much, much smaller, and we’re also not certain how much of this is professional failure, so this is where decisions become even more difficult for some.
Inevitably, people make different decisions about anti-D, as with all interventions. Some are happy to have anti-D at every opportunity, some will decline, and some will decide to have it in some circumstances and not others. Because anti-D is a medicine made from blood, there’s a lot to weigh up, especially when it is offered as routine prophylaxis during pregnancy. This is because it offers no benefit to the current baby. The current baby isn’t at risk. Instead, anti-D is given for the benefit of possible future Rh-positive babies, so it’s an interesting ethical situation. We’re offering a medicine made from blood to someone who won’t personally benefit from it. When we offer it in pregnancy, we’re offering it to the possible detriment of another person, the unborn baby. The baby may also be exposed to risks, but we don’t know enough about what those are, because there hasn’t been enough research into this. We’re offering anti-D for the possible benefit of a person who doesn’t yet exist and may never exist. That’s a rather unique situation and I’ve never been able to think of another example of a drug or intervention for which we can say these things.
There’s a lot to weigh up, and that’s why I’ve continued writing about anti-D for more than 20 years. My latest offering is a completely new book, Anti-D Explained (Wickham 2021), in which I’m aiming to help parents and professionals understand the science, the issues, and the evidence relating to anti-D. As I was writing Anti-D Explained, I inevitably thought of what’s happened during that time, and Midwifery Today played a really vital part in that journey a couple of decades ago.
Back then, policymakers ignored some very tantalising questions about why sensitisation might happen in some women and not others in favour of giving anti-D to everyone. When I realised that, I wanted to explore this question further. I decided that I needed to talk to other midwives who thought outside the box and who were questioning received medical knowledge. So I turned to Midwifery Today for help.
In the summer of 1998, Jan published an article called, “Rhogam: Do Midwives Hold the Evidence?” (Wickham 1998). In that article, I explained some of my findings and invited midwives to get in touch with me if they had thoughts, experience, or insight to offer. We also had this exciting new tool called e-mail that we had been using to keep connected and that some of us were thinking that we could start using for research. It might sound obvious or even old-fashioned now, but I can assure younger readers that this was very exciting and edgy at the time! In fact, this was in the days of the first e-mail lists, when midwives working in rural, remote, or underserved areas were first realising that this new technology connected us in a way that hadn’t happened before.
When I got the Summer 1998 issue of Midwifery Today down from my bookshelves to check the reference for my original article, I stopped to read Jan’s editorial. It was about evidence-based practice, which we were just starting to talk and write about back then. In fact, I was chatting about it a lot at Midwifery Today conferences. A couple of lines in particular caught my eye.
“We have to ask the right questions. We have to take seriously any decision to interfere with the natural cycle. We have to refuse to do anything routinely.” (Tritten 1998: 1)
Some of the midwives in my research made these very same points and, while the kind of research I undertook can only ever give us ideas, and not concrete answers, it seems vitally important that we explore questions and interventions from many angles. Not just from the perspective of trials, which give us only limited information.
What Has Changed?
In that 1998 article, I promised to share the findings of my research in Midwifery Today, and I did that when I published my first book (Wickham 2001). It’s interesting to see what has changed 20 years later. In those years, as I mentioned above, we have seen an increase in the number of points at which Anti-D is offered. We haven’t seen a concomitant increase in robust research which can help women and families make the decisions that are right for them. Neither have we seen things become more woman-centred. In Anti-D Explained, I detail how “consensus” was reached on the decision to offer routine anti-D in the UK. Lay women, midwives, and birthworkers weren’t represented in the conference or group that made the decision. We’ve barely been consulted since.
This is not to say that anti-D isn’t beneficial. It is very effective and it has saved lives. But it’s clearly not necessary for everyone and in every situation; yet there is no appetite to explore that. There has been very little research into the possible side effects on the unborn baby when anti-D is given in pregnancy. There’s also very little concern in mainstream maternity services to ensure that women and families are fully informed and able to make the decisions that are right for them. This isn’t unique to anti-D, of course.
In writing the new book, I became increasingly aware of how many aspects of the decisions (because they occur at multiple points during pregnancy and just after birth) relating to anti-D aren’t covered by good evidence. At times, when I was writing, I felt frustrated that I kept having to explain that I couldn’t give a good answer to a particular question, because we don’t know what the answer is.
Populations, Individuals, and Decision-making
The fact that we don’t always have the answers is the very reason why it’s so important to write books like this. The reason we don’t know is that there hasn’t been a focus—amongst those who make policies and guidelines, set research agendas, and determine ethical principles for research—on gathering information that helps individuals make decisions about their own care. It’s all focused on what we can do for the population as a whole. That may be an acceptable approach at, say, the beginning of a pandemic, or when something is first discovered. But it has been more than 50 years since anti-D was introduced, and a number of people have questioned its use in different situations. Others have suggested researching alternatives. There’s as much in my book about the medical approach to research and knowledge as there is about anti-D itself.
Anti-D Explained joins a family of books that I have written to help women and families make decisions about their care and that of their babies. I can honestly say that I wish I didn’t need to write them. I would much rather sit in my garden, happy in the knowledge that the information people need is given by the maternity services. Sadly, that’s not the reality. It has actually become increasingly important for me to write books like Anti-D Explained, I think. That’s because more women, families, and care providers need to understand the politics of Western medicine and how it deals with knowledge, research, and evidence. I would also have loved to be able to write a book on the twentieth anniversary of my first book, which explained that now we have all the answers, hooray, and here they are. It is true that we have a bit more detail than we had back then, but we still have an awful lot of questions and a long way to go.
There’s one great thing about questions though. If, as Jan and I have both said many times in these pages over the years, we ask the right questions, that in itself can lead to valuable insights. We might not be able to find the answers. We might end up writing just as much about why the questions exist as the topic that we’re trying to share information on. But that in itself helps to increase understanding, knowledge, and personal power, which is a great place to begin.
- Davis-Floyd, R. 2001. “The technocratic, humanistic, and holistic paradigms of childbirth.” Int J Gynaecol Obstet 75(Suppl 1): S5-S23.
- Gaskin, IM. 1989. “Rethinking Rhogam.” The Birth Gazette 6(1).
- Harmon, P. 1987. “Rhogam at 28 Weeks.” Midwifery Today 4: 24–25.
- Tritten, J. 1998. “Evidence-based Practice: Should This Be Our Goal? Midwifery Today 46: 1.
- Wickham, S. 1998. “Rhogam: Do Midwives Hold the Evidence? Midwifery Today 46: 34–35.
- –––. 2001. Anti-D in Midwifery: Panacea or Paradox? Oxford: Books for Midwives Press.
- ––– 2021. Anti-D Explained. Avebury: Birthmoon Creations. In press.