Before becoming pregnant I was unfamiliar with the concept of birth equity. According to the National Birth Equity Collaborative, birth equity is “the assurance of the conditions of optimal births for all people.”
Unfortunately, birth equity is not a reality in most places — including Colorado. Mothers from certain backgrounds — specifically communities of color — face an increased rate of pregnancy complications.
I’ve become more familiar with this concept in recent months. I’m currently 31 weeks pregnant and I have Ashkenazi Jewish heritage. As it turns out, this puts me at higher risk of pregnancy complications — and my pregnancy has been complicated.
This is my first pregnancy, so when my partner and I decided to start trying to get pregnant I asked my doctor if there was anything I needed to do, medically, to prepare. Trusting that my medical provider would give the information I needed, I believed her when she said “start taking prenatal vitamins and have fun!”
At the time I had no idea that people with Ashkenazi Jewish backgrounds are at comparatively high risk of carrying and passing on genetic disorders. It would have been in my best interest for my partner and I to get genetic screening prior to conceiving. However, we only became aware of this when I was eight weeks pregnant, and then we opted to be screened for genetic disorders.
This is where the challenges began. Both my partner and I had trouble accessing the Ashkenazi Jewish genetic blood panel test, were met with lab technicians who were clearly unfamiliar with the test, and waited multiple weeks to get results. To make matters worse, the provider who gave me the news that I was a carrier for four genetic disorders was insensitive and even joked about how I was “the patient who had all that testing done.” Additionally, my partner had to wait until we had my results to get his testing done — this was the only way his tests would be covered by insurance.
The entire process was difficult, humiliating and scary.
We would have been more prepared and supported if we had culturally congruent providers who understood genetic predispositions and were sensitive to our unique stresses, and an insurance company that allowed us to get tested quickly, both at the same time. It is vital that families like ours have the support we need to be educated going into pregnancy and, particularly we need providers who understand our risks and are trained to address them.
I was at 16 weeks gestation when we learned that we were both carriers for spinal muscular atrophy, a serious degenerative muscular disease. This meant there was a 25% chance we could pass this on to our unborn child, which would likely result in infant death.
We then had further and more invasive diagnostic testing, which took another four weeks — four more weeks of waiting to know whether the pregnancy was viable or if we would be faced with the difficult decision to end our pregnancy when I was 20 weeks gestation.
Luckily, my story has a happy ending. The results came back negative for spinal muscular atrophy, and I’m on track to have a healthy baby this July.
Unfortunately, not all stories like this have a happy ending. We simply must do better. The problems I faced could have been prevented or lessened if my medical providers were more informed and better trained about how different populations need different care due to being at higher risk of certain conditions. We need to operationalize birth equity in our maternity care. We owe it to families who have lost loved ones to do all we can to create effective, multipronged strategies.
The three birth equity bills currently making their way through the Colorado Legislature propose investments in the diversification of the perinatal workforce and improvements in data collection. Passing this legislation would be a strategic step forward, but there will be more to do to ensure birthing families all have optimal birth outcomes. We are talking about saving lives and preventing families from having to mourn the loss of a loved one. We must do all we can.
Thankfully Sen. Janet Buckner and Rep. Leslie Herod are setting us on the right track to start addressing these inequities through Senate bills 101, 193 and 194 — Colorado’s first bill package addressing perinatal care and maternal health. Families need this package to pass, and Gov. Jared Polis needs to prioritize early intervention in the perinatal period and sign these bills into law for Coloradans.