Stephanie’s daughter died of cystitis during pregnancy

32-year-old Stephanie had barely given birth to her daughter Rowena when her daughter died. Besides the grief that came with it, Stephanie was left with a lot of questions. In the end, the cause turned out to be a bladder infection. “How could my husband still look at me, knowing that I am guilty of Rowena’s death?”

“On New Year’s Eve 2022, I unexpectedly gave birth to our daughter Rowena prematurely, at 23 weeks and five days. Our first child. Much too small, but completely ‘finished’ she was born, with a length slightly above average and a weight appropriate to the period. Rowena died shortly after giving birth. I had so many questions: why did this happen to us? What went wrong? What did I do wrong? As a mother I felt enormously responsible and at times even guilty. Rowena finally grew inside my body.

Cystitis during pregnancy

At the hospital they asked if we wanted to have an investigation done to try to find out the cause. Because the nurses and gynecologist indicated that it seemed unlikely to them that the cause lay with Rowena, we limited ourselves to examining me and the placenta. A few days later I got a call from the hospital with the message that I had a bladder infection. I immediately asked if this could be the cause of the premature birth. The answer: ‘We don’t know for sure yet, but it could well be’.

I became completely hysterical. Our daughter died of a bladder infection? By something so simple? How could I not have felt that? This was my fault, I should have felt this, should have known. How could I still face my husband? How could he still look at me, knowing that I am guilty of Rowena’s death?

My mother-in-law caught me and I calmed down somewhat. My husband also assured me that this was not my fault. I had no complaints at all, did I? He was even a little relieved, because there was nothing serious wrong with me and a bladder infection is not an obstacle to a possible future pregnancy. Later we also received the other test results that confirmed the suspicion of the bladder infection, caused by the E. coli bacteria, as the cause.

No complaints of a bladder infection

I had no complaints or symptoms of a bladder infection at all. I had no pain during urination, no visible blood in the urine, no constant urges and small pee, and no pain in the abdomen or lower back. As a child I had a bladder infection a few times and that was always clearly palpable. I couldn’t stomach the fact that I had a bladder infection without noticing it, but also that I didn’t know that a bladder infection could be so dangerous.

In conversation with the midwife, I heard for the first time that as a pregnant woman you can indeed have a bladder infection without noticing anything. So much changes in your body that a bladder infection can express itself very differently than you are used to. The obstetrician even said that a bladder infection is a real silent killer, dangerous for mother and child. This was later confirmed by the gynaecologist.

I got an enormous urge for information and started reading all kinds of studies to get a better grip on what had happened to us. If you can have a bladder infection as a pregnant woman without noticing it and if a bladder infection is a ‘silent killer’, why wasn’t I informed about this beforehand? And why was my urine not tested preventively?

Search for an explanation

In my search for an explanation, I found information about preventive urine testing in pregnant women and how the procedure in the Netherlands differs from neighboring countries. In the Netherlands, urine is not tested preventively, but only if there is an indication for this. Neighboring countries do test preventively for ‘asymptomatic bacteriuria’. This means that with a positive test, the woman has bacteria in her urine without complaints of a bladder infection, which can be a sign of an infection. Why does the Netherlands not do this?

Apparently the usefulness of preventive testing is based on old studies where the quality was questioned. A Dutch study investigated, among other things, the consequences of untreated asymptomatic bacteriuria (ASB) in pregnant women. It was concluded that women with ASB had a higher risk of renal pelvic inflammation and symptomatic urinary tract infection, but no higher risk of preterm birth or of having a baby with a low birth weight. The cost-effectiveness of preventive testing was also examined in the study. And you guessed it: preventive testing is expensive.

Antibiotics during pregnancy

In addition, there are concerns about the effects of antibiotic use during pregnancy. In the case of a positive preventive test, antibiotics are often immediately prescribed, without further investigation to determine whether there is actually a bladder infection caused by the bacteria. This is undesirable, because recent research shows that the use of some types of antibiotics during pregnancy may increase the risk of birth defects. However, this Dutch study has several limitations, such as the small group of participating women with untreated ASB; only 163 women compared to the 4018 participating women without ASB. Is this research representative?

In addition to the Dutch study, there are foreign studies that do confirm the relationship between untreated ASB and premature birth. A commonly heard conclusion is therefore that more research is needed. The position in the Netherlands is that in the absence of such studies, the current line of non-preventive testing will be continued. The usefulness of testing is insufficiently proven.

The problem

Somehow I do understand the procedure in the Netherlands, despite the fact that I would have liked to see it differently. The problem seems to lie in distinguishing ASB without an infection and ASB where there is an infection. And subsequently that antibiotics are of course only prescribed when necessary, in order to prevent overmedication and the possible negative effects of antibiotics.

Another ‘problem’ of preventive testing is the cost. In my case there were no clinical signs of an infection, after all I had no complaints, but the bacteria that caused it could have been detected with a preventive test. And from there, further research could have been done to diagnose and then treat the infection. Which does not guarantee a different outcome, but does offer an opportunity.

What I do not understand is the lack of information about the fact that you can have a bladder infection as a pregnant woman without noticing it. And that an untreated bladder infection can be very dangerous. I really had no idea and the midwife didn’t share any information about this either. I would have liked to have known this, so that I could have taken preventive measures myself, for example by regularly doing a urine test myself and reporting a positive test for further investigation.

Common cause of premature birth and infant death

I understand very well that so many things can go wrong during pregnancy and midwives cannot go through them all with you. Only our gynecologist told us that a bacterial infection is one of the most common causes of premature birth and infant death. Then information for prevention is not a superfluous luxury, is it?

Pregnant women have the right to be well informed about real risks, so that they can make conscious choices themselves. I am of the opinion that someone else should not decide for me or other pregnant women that such information is not useful. Pregnant women literally and figuratively put their child’s life in the hands of the care providers. Then please make sure that pregnant women are well informed.

By sharing our story I want to create awareness and hopefully willingness among midwives and other healthcare providers to provide information about this. It does not guarantee that this will prevent premature births, but it does offer an opportunity. It’s too late for us. We won’t get our beautiful girl Rowena back with this, but if we can make a difference for just one baby, then at least something good has come out of our nightmare.”

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