Inadequate Health Records Are Failing Mothers and Providers

Janae Sharp
JULY 17, 2018

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Healthcare Records Fail Mothers

We are failing mothers and healthcare providers with our inadequate healthcare records. One of the failures comes from women going into labor while traveling or going to a different hospital than the one where their physicians work. Other women, meanwhile, don’t have the luxury of missing work for regular prenatal care.

A certified nurse midwife (CNM) on Twitter shared her experience caring for a patient with a history of rheumatic fever and mitral valve disease. The patient wasn’t sure what her due date was. The midwife told me, “It happens all the time, especially in my urban area with multiple large health systems.”
I have personally experienced this lack of access to health records—a problem between two units that were literally in the same building.

My Healthcare Records

Pre-existing conditions and past pregnancies influence care and precaution in prenatal care. That knowledge should be stored in easily accessible records. I am especially aware of this because I am pregnant. While I couldn’t remember all the details of every visit, I am going to add a note here, to demonstrate the impact of inadequate healthcare on even a person with a minimal pre-existing condition, who is an informed and confident advocate for her own care: me. I am expecting a baby on Nov. 11. While I currently live in Utah, my other pregnancies were in Pennsylvania, and I wish there were a way to track the differences in my tests and the baby’s health between my previous pregnancies and this one.
Overall, I’m very glad this baby doesn’t seem to want to kick me right in the spine like my second child. I am more than halfway through this pregnancy, and I think it is safe to say I am a miserable pregnant human. My mother says I’m a bit too grouchy to talk to—and she is my mother. I have three children. I work. I am tired.

And my records, even for this pregnancy, are strangely disconnected. If maternal health in the U.S. is going to improve, then we will have to admit we know nothing about pregnancy, and our separated data are only compounding the issue. At the beginning of my pregnancy, after a home test, I went to my primary care doctor to have blood work done. She sent me to the lab next door. Those tests took a few days to come back, after a positive urine test.

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Then I needed to find an obstetrician who took my health insurance, which was even more complicated because I switched this year.

I’ve had four pregnancies and spotting in the first few months for every pregnancy, so I usually get an ultrasound pretty early. My first ultrasound had the heartbeat. I was still in shock. Some days I still am. I checked the levels of my second blood test. Neither blood test is in the patient record with my obstetrician. The start of every pregnancy for me is strange, and when I had the same obstetrician I didn’t end up duplicating tests. That information wasn’t there anymore, so I ended up with the most conservative plan. Maybe it’s always safe to order more tests, but I hate telling the story over and over again.

I got sick. I went to my primary care doctor. I got antibiotics. That visit isn’t in my OB-GYN record.

I visited my obstetrician for my first checkup. They did blood work. The lab is in the same building as the doctor, just downstairs, where a very friendly woman has taken my blood. I also did blood work in the office. The in-office blood work is in my record, but the downstairs blood work shows up as a sort of widget with a report that it has been “seen.”

I got sick again. My primary care doctor told me to have less stress. I magically released my existential stress into the universe, as I took prednisone and in-office breathing treatments and antibiotics. I was extra angry that week. That isn’t in my health record.

I haven’t gained any weight, and I’m 22.5 weeks pregnant. I actually lost some weight. People congratulate me on how amazing it is that I’m not an Oompa Loompa rolling about with baby No. 4. In all fairness, I feel like an Oompa Loompa, and I think all my muscle sort of melted. I know what is coming in the third trimester: Have no fear, I will be puffy.

Let me tell you about what pregnancy weight loss is like.

You will throw up. You will hate the smell of meat. You will throw up sometimes at the smell of meat. Humans also smell bad. Tomato soup is not an acceptable offering on the altar of food. I’ve had IV hydration and nutrients. Those help for a bit. Those visits were to the hospital and are not in my healthcare record. After week 17, they tell you to start taking medication that they offered in week 12. It will make you sick. The prescriptions from my primary care physician are not in my health record. I can’t see the anti-nausea medication in my portal either. There is still an order for an in-office urine test from two visits ago that did not get recorded that shows up under my patient list of things to do.

You will be angry at the dad. You will want him to fix what has happened. That is not in my health record. The doctor told me to go to a counselor to get help with stress. I am still waiting on one that my health insurance will pay for. That is not in my record.

I got the flu. According to the modified pain scale, the flu while pregnant was roughly equivalent to praying for a mercy killing. I went to my primary care doctor. She suggested I take time off work and see if I can get more help with my kids. She looked at me and said, “You are going to be sick this entire pregnancy because you are raising three kids and working and stressed.” That advice isn’t in the record for my obstetrician.

>> READ: Handling the Headaches of At-Home Genetic Testing

Now comes genetic testing! My obstetrician referred me to an office downstairs from hers. The records are separate. They ask me about my due date, and we learn that is is much earlier, which I knew from an earlier ultrasound. The change was not in my health record.

I wait a week. I am having a boy. He is healthy. The genetic test is in not my record. My physician manually adds the results and looks over my history. Manually reviewing the records seems time-consuming.

I travel to Boston for work. Right before I get on the plane to come home, I feel sick—dizzy and cramping. I get on the plane anyway because I don’t want to go to an out-of-town doctor who doesn’t take my health insurance. It’s time to be sick again. This time my friend comes to help, and I really do stop working for a bit, because I have low blood pressure and am passing out often. The first day she comes, she tells me I don’t make a lot of sense. She calls my doctor, and I go in and tell her I feel fine. The doctor and nurse go over my food. And water. Order more testing. I have low blood pressure, which gets bad in the second trimester. My obstetrician asks if I had a life change or increase in stress. I told her I don’t think so.

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