“Speak up. Ask questions.” As a health care researcher in the public engagement field, I have developed and tested materials for patients and families which encourage these exact actions. No surprise that when I got pregnant with my first child last summer, these phrases were always on my mind when I visited my doctor’s office.
My pregnancy was quite typical – I experienced the usual symptoms such as morning sickness, heartburn, fatigue. And every appointment, I would walk in with a long list of questions for my doctor. Most of my concerns were brushed off as normal…the doctors weren’t worried and for the most part, neither was I. So they would pat my back, and send me home with a smile.
As I approached 36 weeks, I knew that something was off. But like my doctors, my family and friends would reassure me that nothing was wrong. “Relax, don’t worry, get some rest.” These were the words of advice I heard. After a few days of swollen ankles, puffy eyes, pain on the right side of my abdomen, and just a general feeling of sickness, I decided to take action. I got my blood pressure checked at the local pharmacy which confirmed my fear that something may be wrong. It was unusually high. In the back of mind, I had a feeling that my symptoms could be pre-eclampsia, a condition I had read about in pregnancy books and online. I made the call to my doctor and was asked to come to the hospital as soon as I can.
The next 48 hrs were a blur to me. My doctor confirmed my fear and diagnosed me with pre-eclampsia and partial HELLP syndrome. I was given two choices for delivering – both were risky and I was scared. I had never even been admitted to a hospital for anything in my 29 years. “What about my birth plan? I didn’t even finish packing my hospital bag!” These were some of the thoughts racing through my head. And as I was just reaching 36 weeks, the most important thought: “will my baby be okay?”
I delivered the following day and gave birth to a beautiful girl. She was perfect and we were finally a family of three. The next few days were stressful though…learning to breastfeed, multiple providers coming in and out of our room at all hours, and the pain from delivery. After several days, I still did not feel well. But once again I heard the same words from my doctors, nurses, and loved ones – “Relax, don’t worry, get rest.”
The patient engagement side of me kicked into high gear again. I insisted that something wasn’t right and I was not okay. To cut a long story short – I ended up with a subarachnoid hemorrhage in my brain from the high blood pressure and was transferred to another hospital 30 miles away for care in the neurosciences ICU. My baby stayed at the hospital where she was born due to her own health issues and we were separated for 5 nights, and 6 long days. Thankfully, we are both alive and recovered and my daughter is now 6 months old. I will never forget those days leading up to my delivery and the 8 nights I was in the hospital.
Although I didn’t have the birth experience I expected to have, these are some of my lessons learned:
• Trust your instinct. If you feel like something just isn’t right with your health, trust your own gut.
• Speak up. People may shrug off your concerns especially if the symptoms are perceived to be “normal” for your condition, but regardless, speak up, get your voice heard, and questions answered.
• Reach out. If at any point, you are unable to speak up or get the care you need, reach out to a family member or close friend. They can act as an advocate for you in the hospital.