Determining the cause of stillbirth

There are a lot of potential causes of stillbirth, and unfortunately a lot of parents never find out what happened. But there are tests that can help parents and their doctor gather information. Here are the tests listed in chapter 3 of Trying Again: A guide to pregnancy after miscarriage, stillbirth, and infant loss* (paraphrased, with a few more tests added):

Test When What
Amniocentesis Before delivery Chromosomal or developmental abnormalities (can be done up to 2 weeks after fetal demise)
Amniotic fluid culture Before delivery Infection
Blood test Before delivery Infection, antibody problems, if fetal blood entered mom’s bloodstream, drug use
Urine test Before delivery Infection
Culture and exam of placenta After delivery Can provide clues if placenta was not developing normally, if it separated from the uterus, etc.
Exam of umbilical cord After delivery Make sure the baby was getting enough oxygen and nutrients
Autopsy After delivery Can sometimes determine cause of death
Photographs of stillborn baby After delivery Especially if autopsy is not possible or not wanted, photographs can be sometimes be used to diagnose some chromosomal or developmental abnormalities
Genetic testing After delivery Can sometimes diagnose chromosomal abnormalities
Vaginal culture Before and after delivery Infection

To be honest, I don’t know what tests I had – everything was so fast and horrible after I learned Ada did not have a heartbeat (we were in the hospital for induction about 30 hours after the sad news). I wasn’t capable of doing any research or anything like that. I need to talk to my doc about what data we do have, and I’d like to order my full record from the hospital.

In retrospect, a vaginal culture before labor was induced could have been useful. I ended up with a painful strep infection after delivery, that could have been acquired in the hospital. I also had a urinary tract infection a few weeks before we learned Ada had died, and a yeast infection very early in the pregnancy. Was a vaginal infection also present at that time, and could it have been a potential contributor to Ada’s death? Probably not, but we’ll never know, and that’s frustrating.

We did order an autopsy, placenta exam, and genetic testing. Some parents don’t want to subject their baby’s body to an autopsy, and I can understand that, but we wanted as much information as possible. The autopsy found that Ada was developing perfectly, with all of her organs the right size and in the right places. My placenta was mostly normal, with some changes that may or may not have been evidence of abruption. The umbilical cord was normal, with 1 vein, 2 arteries, and the right amount of Wharton’s jelly. They were not able to do genetic testing (karyotype) because they weren’t able to find viable (living) cells in her tissue sample. As a geneticist, I really would have liked a picture of her chromosomes, so it was disappointing that this test was unsuccessful.

Example of a karyotype by Can H. via Flickr.

Example of a karyotype by Can H. via Flickr.

We weren’t expecting any conclusive results from the genetic testing. Most chromosomal abnormalities detected in a karyotype would have demonstrated in some sort of developmental or physical abnormality. Although, recently developed testing with microarrays is much more sensitive so they could have found something not detected in the autopsy, if anyone is actually using the new test yet. Sadly, I doubt anyone is using it, even though it could be so useful, because it takes forever for something to get from the scientific literature to actual patients.

According to the MedlinePlus article about karyotyping, they could have used placental tissue instead of or in addition to fetal tissue, and the microarray article linked above said umbilical cord blood could be used too. I don’t know why this wasn’t done for us. Maybe it just isn’t normally done – but why not? Especially in cases like ours when the baby passed away before delivery so they know they probably won’t get viable cells. Another way to get that info (and the picture) would have been amniocentesis. I didn’t know amnio could provide clues even though Ada had passed away. If I had known that, I might have asked for one before we induced delivery. Or maybe they could have collected amniotic fluid before my amniotic sac ruptured (water break)?

So many regrets about what could have been done. I know it wouldn’t have changed anything, and probably wouldn’t give us any more info than we have now. But any more information, even negative results, could be helpful in our grieving process and in deciding if we want to try again. I think the most frustrating thing is that Ada was perfect. Not only were all of her parts in the right place and the right size, she was developing right in time with her gestational age. Any of the other problems that could have happened (except for abruption) would have had some obvious symptoms like slow development or a deformity. But Ada was our perfect baby.

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* Out of the books on stillbirth that I’ve read so far, Trying Again: A guide to pregnancy after miscarriage, stillbirth, and infant loss is the best one, despite being very out of date. It skips the personal stories (for the most part) which is good (I’d rather read stories on blogs , forums, and Facebook, where I can actually interact with the women if I wish). Instead, it focuses pretty firmly on the science and helping you to avoid another fetal demise or at least helping you decrease the anxiety that will surely come if you are able to / want to become pregnant again. The sections on stillbirth are particularly welcome, since so many books focus on miscarriage and barely touch on stillbirth.

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