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How do I know if I am "at risk" the first time around?

Questioning assumptions during care for a first-time pregnancy.

Photo of Rekha
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It was May 2005. My wonderful husband and I had been married for over two years. We had moved to the Bay Area from the East Coast with great jobs. Our offer on our first home had been accepted a couple of months ago in a crazy housing market and we had moved to our own home. We found out that I was pregnant. We were excited and scared. I didn't have a regular doctor at the time so I researched doctors and chose an OB/GYN who looked great on paper. I went for the first visit at about 8 weeks. She did the routine tests and Pap Smear which all looked okay. I asked her about an ultrasound and she said they did that only 20 weeks into the pregnancy for non high-risk pregnancies, anything earlier did not yield any useful information. How do you know I'm not high risk - I wondered. The doctor focused on the heartbeat which was strong and healthy. 

I had severe nausea and vomiting and struggled to cope with work and home but was told that it was normal and it would pass. Two of my friends who were pregnant at the same time spoke of early stage vaginal ultrasound where they saw their little peanuts and their heartbeat. The emotional side of me wished I could have the same but didn't push further for it. 

About 16 weeks into the pregnancy, one afternoon I started to have slight spotting. I immediately contacted the doctor's office and went in. I was seen by a nurse and midwife who said that sometimes spotting is normal. She again checked the heartbeat which was normal. She said that everything looks good but since we were really concerned she would have us go in for an ultrasound at the hospital across the street. So my husband and I walked over and had the ultrasound done and reviewed by a doctor there. He mentioned briefly that there was some irregularity with the baby where the abdominal cavity had not completely closed but that it might happen on its own during the course of the pregnancy. I had this feeling that something else was wrong but he said my doctor would talk to me. I still remember waiting in the lobby in the hospital. My doctor from across the street called the staff counter on the phone and asked for me. When I got on the phone she said "I'm sorry to inform you that you're going to need to terminate the pregnancy. You have a partial molar pregnancy, which means that there's a cluster of cells growing on the placenta that secretes the pregnancy hormone. These pregnancies usually have a non-viable fetus and you are at risk of hemorrhaging if you don't terminate. We don't do second trimester terminations in our office but we will refer you to a doctor in San Francisco." All this information was relayed to me on the phone in a public lobby and not in the privacy of an office - I broke down, feeling exposed with people staring at me all around.

What happened next was a nightmare that I won't write about here. But what I will focus on is that this condition could have been diagnosed at 7-8 weeks of pregnancy with a simple vaginal ultrasound. There could have been a first trimester termination. There would still be emotional scarring but we could have eliminated three months of trauma followed by extreme emotional distress for the next two years until my daughter was born (under the watchful care of a different and absolutely wonderful doctor).

I share this so other women especially with their first pregnancies can be more watchful and in charge of their own care. I also write this to question the protocols for "non-high-risk" pregnancies where there is no history yet.

What is a provocation or insight that might inspire others during this challenge?

How might we design prenatal care to effectively diagnose problems in pregnancies with no prior history of the same?

How does this research relate to our use cases and personas?

I believe that this experience relates most closely with the persona of the under-resourced mom. Being on HMO insurance I believe was one of the reasons why my care was bare bones compared to others.

Tell us about yourself:

I have worked at a digital health startup and was a life sciences researcher in my previous life. My passion lies in the marriage of customer success and the design of intuitive customer journeys.

Are you currently an employee of Sutter Health or UCB Pharmaceuticals?

  • No

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Photo of Kate

Hi Rekha!

Thank you for sharing your story with us. It really highlights the reason why we are having this challenge. I am sorry for your loss.