Into the unknown: navigating treatment decisions during pregnancy
15 July 2020
The lack of research around medication use in pregnancy means women with chronic conditions often face extremely difficult choices when they want a start a family.
In 2015, I was diagnosed with a progressive form of inflammatory arthritis, called axial spondyloarthritis (AS).
After months of intense pain and fatigue, I was finally prescribed a biological therapy to help reduce the levels of inflammation in my body. The treatment was transformative and greatly improved my quality of life. It also allowed me to plan for the future, including having a family.
Before I decided to get pregnant, I had a discussion with my consultant rheumatologist about the impact a future pregnancy may have on my disease. I was told that my treatment should be stopped at 16 weeks of pregnancy due to a ‘theoretical increased infection risk’ to the baby. When I queried what this meant, my rheumatologist explained that the drug crosses the placenta after 16 weeks, and has the potential to affect the baby’s immune system. However, he noted that the impact of biological therapies on fetuses was still largely unknown due to a lack of research in this area.
Of course I wanted to put my baby’s health first, but I was concerned about the risk to my own health and ability to cope during pregnancy.
Risk management: choosing between treatment and pregnancy
Despite poor evidence, the guidelines were clear. If I wanted to get pregnant, I would need to come off all treatment.
I was extremely anxious about the prospect of pausing treatment during pregnancy. Of course I wanted to put my baby’s health first, but I was concerned about the risk to my own health and ability to cope during pregnancy. Research shows that the discontinuation of AS treatment during pregnancy often leads to disease flares, and my consultant was also unclear about whether the treatment would be as effective once I resumed it after I had given birth.
Once I had become pregnant, I decided to transfer my care to a specialist hospital that had a joined-up multidisciplinary clinic led by both rheumatologists and obstetricians. During my 20-week check-up, my new team of consultants told me that it would, in fact, be possible to continue treatment throughout pregnancy as I still showed active disease levels. They explained that treatment decisions are often at the discretion of the consultant, and many pregnant women do continue with their medication.
At this point, I felt extremely frustrated about the conflicting advice I had received. I was then faced with another difficult decision about whether to remain on the treatment and prioritise my own health, possibly at the expense of my future child’s health. After some lengthy discussions with my healthcare team, husband and family, I decided to continue the treatment.
Throughout my pregnancy, I remained healthy and fit with low levels of disease activity. In late 2019, I gave birth to our daughter. She is now a thriving and active seven-month-old, with no health issues.
I feel that more robust research and data into the effects of treatment on pregnancy outcomes would have made my decision far easier, and may have also prevented the conflicting advice I received from healthcare providers.
More research could support women to make difficult choices
Reflecting on my experiences, I feel that more robust research and data into the effects of treatment on pregnancy outcomes would have made my decision far easier, and may have also prevented the conflicting advice I received from healthcare providers. Furthermore, greater emphasis should have been placed on the benefits – to both myself and my baby – of continuing treatment in pregnancy.
I recognise that I was in privileged position to be able to choose my team of healthcare professionals and seek out care that was in my (and my baby’s) best interest. Access to a rheumatologist and obstetrician in the same room was hugely valuable and reassuring. Furthermore, my background as a health researcher and physiotherapist meant that I had the knowledge and tools to be able to conduct my own research on the topic and make informed decisions. This isn’t always the case for so many women living with chronic diseases globally, who often must face these complex decisions alone.
While pregnancy only lasts nine months, treatment decisions made during this time can have significant long-term effects. That’s why HPP’s new report is critically needed: not only to raise awareness of the challenges that this group of women face, but also to help drive forward future research and policy action. I believe the pillars of action outlined in the report represent a very important step in transforming care for pregnant women living with chronic diseases. I just hope that women in the future will no longer have to make these difficult choices.
Emily Kell is a Chartered Physiotherapist and works with HPP as a Consultant Researcher.