If you're reading this, chances are a baby you love has died. And we know from experience that there is absolutely nothing worse. We are so very sorry.
Too many families never get answers after losing their baby; it's not right, and it's not fair.
There are many (rarely simple) reasons why a pregnancy may have ended in a stillbirth or other neonatal loss. And it is never a mother's fault.
If your child was born still, you may have elected to do some testing such as an autopsy, placental pathology, genetic testing, and/or blood tests. (In many cases, though, parents are not encouraged to seek answers, so if you didn't do those things, know that you are not alone - and there are likely still opportunities to learn more, even if your loss was years prior.)
Here's where to start:
Ask your providers for a copy of your child's Fetal Death Certificate (for stillbirth/miscarriage) or Birth & Death Certificates (for neonatal losses), ideally before leaving the hospital. If you worked with funeral home, they may also be able to supply this information.
While the details are fresh in your mind, write down any observations about the days/weeks leading up to your loss, and your birth experience. Particularly note any changes to your baby's fetal movement patterns, any symptoms you noticed, and anything your providers may have mentioned that sticks out in your memory.
For many families, details that seemed insignificant at the time can yield important breakthroughs later when more context is available through test results and expert consultation. Remember, YOU know your baby and your body best. Trust your intuition and make note of anything which you think could be important, even if others disagree. It's never too late to record your thoughts and impressions - your voice MATTERS.
If you elected to have any testing done at the hospital, contact your care team to request the reports. (It may take several weeks after birth for them to become available. Be persistent, and enlist the help of a loved one if needed.) This may include:
Autopsy report
Placental pathology report
Genetic testing results
Blood test results to check for evidence of infection, clotting disorders, Fetal Maternal Hemorrhage (FMH), etc.
If your results come back inconclusive (cause of death unknown) or if the explanation you've been offered doesn't seem right, you still might be able to investigate further - even several years later, and even if you elected NOT to have testing done at the hospital at the time of birth. The reasons for this are:
Your baby's placenta is genetically unique to your child and often holds answers of what went wrong in a pregnancy.
There are not many pathologists in the United States who have been specifically trained to evaluate perinatal deaths. While general pathologists are highly trained to look at the human body for causes of death, they are not often trained to look thoroughly at the placenta; only a perinatal pathologist with specialized training in placental pathology will have been trained in what to look for in the case of a stillbirth or other perinatal loss.
Placentas of babies born still are routinely sent to the pathology department of the hospital where the baby was delivered, and microscope slides with sections of the placenta are typically preserved for at least ten years. This is standard procedure in most hospitals, even for babies who did not have testing.
If your baby's placenta sample is still on record, it can be sent upon request, along with medical records and ultrasound images, to a perinatal pathologist who may be able to provide more answers.
The researchers listed below are placenta experts and will examine your baby's placenta slides after a stillbirth to help diagnose a cause. Contact them for more details about the process and likely cost (some aspects of the examination and consultation may be covered by insurance).
Harvey Kliman, MD, PhD (Yale University)
Visit klimanlabs.yale.edu/placenta/pregnancyloss for more information. If you have questions, Dr. Kliman's Research Assistant Kristin Milano is very responsive over email or phone: (203) 785-7642.
Mana Parast, MD, PhD (University of California San Diego) Visit perinataldiscovery.ucsd.edu/projects/perinatal-loss.html for more information. Email Dr. Parast to inquire about steps to request a placenta review.
You may also wish to schedule a consultation with a PUSH Trusted PAL (Pregnancy After Loss) Provider to help you investigate your loss - these providers work with the experts listed above and other skilled pathologists in their networks to help families find answers, and if desired, create a plan for future pregnancies that will help you feel empowered, informed, and safe.
We know from experience that the grief and trauma of losing a child is physically, mentally, and emotionally draining; if you are feeling overwhelmed, you are not alone.
But even if you're not ready yet to investigate your baby's cause of death, we strongly recommend initiating this process sooner rather than later.
You can always choose to wait to review the results, but by requesting a placenta review from an expert, you can ensure that:
Your baby's placenta and genetic material will be securely stored at a facility run by people who care deeply about stillbirth research and loss families
Accurate information is safely recorded and available if/when you are ready to process it; this will be particularly important if you plan to pursue another pregnancy
Your baby's records are helping to inform research and clinical changes to improve outcomes for future families
Follow us on social media for more helpful advice and support.
PS - If you or someone you love has lost a baby, you may also be interested in the following resources:
PUSH Directory of Recommended Resources for Pregnancy/Infant Loss
#StillCounts Awareness Campaign (because every baby born still #StillCounts!)
Follow @StillCountsOrg on social media for PUSH content tailored for bereaved families
Stillbirth Facts & Figures (including shareable graphics)
Become a PUSH Changemaker Volunteer: see Get Involved
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