Inspiration, Compassion, Anger & Hope
On Monday I hosted the Pregnancy Sickness Support Healthcare Professional Conference in Birmingham which saw a host of excellent speakers discuss the services they are running for women with hyperemesis gravidarum. We were lucky also that Caroline De Bie from The Pregnancy and Medicine Initiative was able to fly over from Brussels for the event to present. I asked her to write about her experience of the day...
The HG conference this week was a poignant experience. It moved me in many ways, both on the personal and the professional fronts, with an explosion of emotions, from inspiration to compassion, from anger to hope.
I am not an HG sufferer. In fact, I was lucky to experience no real nausea during pregnancy. So hearing about how these women’s lives, their families’ entire world, were not only turned upside down but shaken, derailed, sometimes even compromised by this condition was such a heart-wrenching eye opener. How can something as beautiful as bringing a new life into the world have such devastating effects?
I was inspired by the women (and men) I met at the conference – the women who are giving their time and energy to help others, the ones willing to tell their story - the suffering and fear they lived through- to help others benefit from their experience, and also the people who were brave and fought the system, and the ones who are working hard to change things.
But I also felt so ANGRY. Angry that women would be denied, in the 21st century, the basic right to receive proper medical care for a condition that might KILL THEM. We heard about the consequences: termination of wanted pregnancies, long-term health impacts for the mother, potential developmental effects on the child, post-traumatic stress disorder, DEATH... And yet, still today, a pregnant woman might go to her GP complaining of repeat vomiting and nausea, and be told “that’s normal” and sent home. She might show up at the emergency department completely dehydrated and be sent to the psychiatric ward. How can this be happening? Pregnant women with other pregnancy-related medical conditions (gestational diabetes, high blood pressure, toxoplasmosis) are getting care and monitoring, why is this condition any different? Is the ghost of a disastrous medical mistake made 60 years ago going to deny these women’s right to evidence-based solutions forever? Of course, taking medications during pregnancy might also present risks, but who makes the decision of which risk is worse? Regulators? Industry? Healthcare providers? Shouldn't the women directly impacted have a say?
The great thing is that there is hope. There are studies taking place, there are guidelines being created, there are great women and men who are dedicated to making things change. There is still a long road ahead, and many challenges. But if more people – healthcare professionals, regulators, industry members –hear these women’s stories, perhaps the system will be adapted to grant them the right to appropriate care, informed decisions and evidence-based solutions. And everyone who was there is, in their own way, contributing to making that happen.
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