My name is Sally Darby and I’m a a member of the Patient and Public Involvement advisory group for MuM-PreDiCT.
I was recently invited to speak at the Drug Information Association (DIA) Europe conference, at a session entitled, ‘Assessing Exposures to Medicines During Pregnancy: An Evolving Landscape. Track: 04 Pharmacovigilance and Safety’. I was asked to explain my experiences of pregnancy and childbirth as a woman taking medication for chronic health conditions. I was to follow papers delivered by medical professionals and researchers examining the impacts of medicines upon pregnancy and how best to include pregnant women in medical trials and research.
The session chair asked me to tell my personal story about my experience of wanting to become, and then becoming pregnant whilst taking medications, including what I was thinking when I found out I was pregnant, who I discussed issues with, how I came to my decision about pregnancy and medication use, and any other issues I felt were important. This could also include any concerns I had for my child as they developed due to taking medication while being pregnant. I was asked to talk for 5-7 minutes and then answer questions as part of the panel discussion. I opted to appear at the conference by video link rather than travelling to Brussels. Several other speakers were appearing virtually and there were also conference delegates present in person.
I spoke of my experiences of deciding to become and then becoming pregnant after having been diagnosed with Multiple Sclerosis (MS). This pregnancy was before I started taking medication for MS. I then talked through the very different experience of my second pregnancy, when I was on Tysabri, a disease modifying therapy (DMT) for MS. I explained the collaborative process of planning my pregnancy involving my husband, my neurologist, physiotherapist and other medical professionals. I was monitored closely through my pregnancies and had obstetrician-led care throughout. I was advised to have caesarean sections for my births.
During my second pregnancy I stopped taking my medication on medical advice, returning to the treatment two days after the birth. My second pregnancy was difficult in large part due to the need for me to manage my MS symptoms without medication. Since the birth of my second child I have changed DMT and now take Gilenya. I have been advised by my MS team that it is dangerous to mother and baby to become pregnant whilst taking Gilenya. I spoke at the conference of how this is a significant factor in my decision not to have any more children.
Following my short talk, the panel were asked a few questions. I was asked specifically about the challenges women taking medications face in pregnancy and how medical professionals can support them better. I spoke here about the anxieties and concerns I felt during my pregnancies, which were largely about having and caring for a newborn baby. I pointed to examples of care I know happens in some areas of the country today where hospitals and medical teams work closely together with maternity care to support pregnant women with pre-existing health conditions and ensure they feel prepared for the experience of childbirth and early motherhood.
Although I found the experience of talking to a group of experts in their fields a little intimidating and certainly nerve wracking, the delegates and panel made me feel very welcome and listened to. I hope that my contribution demonstrated the personal implications of their valuable research. I received a kind email from the session chair following the conference in which she stated her appreciation for my honest and personal account.