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I was 26 years old, had been married for 3 years, and I was thrilled to be starting a family. My pregnancy had been perfect and I thought I was as prepared as I could be for parenthood. What I didn’t know and wasn’t prepared for was to be told that my child had died just days before his due date. Among the many emotions and questions of those next few hours, I was asked a ‘simple’ question: Would we like an autopsy performed?
I was blissfully naive on many of these issues surrounding death. I had been to funerals, of course, but I was fortunate that none were my responsibility to plan. The same is true for autopsy – I knew they occurred and had reviewed some autopsy reports of my patients. But, I had never been the one to make the decision that it needed to happen. And I was trying to learn in the fog of acute grief.
My first thought was absolutely NOT! I have seen too many episodes of CSI to want anyone touching my baby in that way. It couldn’t bring him back, so there was no point. My next thought was surprise that I was given the choice. In my pediatric practice, an autoposy is generally required for any unexpected death in an otherwise healthy child without an obvious explanation. Then my final thought was whether I would have regrets? Will this haunt me in years to come if we don’t do everything we can to have an answer? This entire sequence happened in about 2 seconds. And it appeared I was expected to give the nurse an answer within another few seconds.
I am not alone in my reaction to this question. Many parents have told me they had similar thoughts. Most simply say no because it’s the answer they are most comfortable with at the moment and it makes the whole issue go away.
Autopsy rates for stillborn children are incredibly low in the United States. I believe there are several reasons for this that need to be discussed and approached very differently. Here arte some of the questions I SHOULD have asked in those few seconds and the answers I wish I had known then…..
1. What is an autopsy?
I prefer to talk about a stillbirth evaluation. Autopsy carries a stigma and gives families preconceived idea of what will happen – which may not be accurate at all. I didn’t know that there are many types of evaluations that can occur – and families can pick and choose which options would work best for them considering their situation, concerns, finances, customs and religious considerations, and emotions. These options may include asking mom and dad about all aspects of the pregnancy and their experiences (often called a verbal autopsy), blood tests of mom and/or baby, examination of the cord and/or plaeenta, physical examination of the baby, chromosome (genetic) testing of the baby, imaging (ultrasound, xrays, MRI, etc), internal examination of specific organs, or complete internal examination. This evaluation is not an ‘all or nothing’ event, yet it is usually presented that way.
2. What can we learn from a stillbirth evaluation?
Each of the types of evaluation can provide different information. If all options are chosen, we can learn about chromosomal or anatomic abnormalities, infection, placental insufficiency, cord accidents, clotting disorders, diabetes, and much more. It is true that many stillbirth evaluations do not provide an answer. However, the more testing that is done, the better chance there is of having an answer. Ruling out possible causes is critical. In addition, I think it’s important for families to recognize the value of no answer. I didn’t understand this until my second pregnancy. It was a relief to know that I didn’t have an underlying health condition or genetic issue that would automatically place all future pregnancies in jeopardy. Some women will learn about these types of conditions and be able to receive treatment in future pregnancies that will help prevent a similar outcome. We can’t have that peace of mind or the knowledge that treatment is needed if we didn’t look for the problem.
3. Who performs a stillbirth evaluation?
Again, this depends on the various types. Pathologists generally perform cord, placenta, and internal organ examinations. A pediatrician might perform an external physical exam. Radiologists would review imaging studies. Your OB/midwife might complete the verbal evaluation. Hematologists, geneticists or other specialists might review different blood or tissue tests. However, autopsy is not generally recognized as a team project. If done correctly, however, it can be. With regard to pathologists, this can be difficult because placental and fetal evaluation is not a daily activity for most general pathologists. Some are more comfortable based on their training and their experience, and some are not. We recognize this is not a failure of a person or institution, but of the system and the reality of healthcare. For any health care providers reading this – please know that there are wonderful organizations and individuals in the US and around the world that are willing and able to provide training, consultation and second opinions for pathologists who will ask for the help! Contact us for this information.
4. How much does an autopsy cost?
I don’t want to sound like a broken record, but this again depends on the extent of the evaluation completed. It also varies with circumstances. Some insurance companies will cover these tests. Many will cover the tests on mom and the placenta, but not the baby. Some health facilities absorb the cost in these situations. Some providers will donate their time and only charge for supplies. Some providers will donate anything not covered by insurance or have a fee schedule based on ability to pay. We are aware of a few organizations that will help with autopsy costs for those in need. It’s impossible for me to say with any certainty what this would cost, but I do know there are options and families should be given all the information.
5. What if I want an open casket at the services?
This is a common concern that is usually unfounded. I have been reassured by every pathologist that I have talked to than an open casket is absolutely possible even after a full, traditional autopsy. Some families have found it comforting to include their desires in the orders so the pathologist can be mindful of this wish. In any case, this should not be the deciding factor for this decision.
6. Why is it important?
This is difficult in the intense moments immediately following bad news. One possible benefit is avoidance of regret. Some families later wonder if they could have learned something else. Many, like I did, will start to think about this once pregnant with another child. A benefit on a larger scale is the public health aspect. Again, most families will find it difficult to consider public health concerns at this time, but it is worth mentioning. Information about causes and prevention of stillbirth is sadly behind most other major causes of death in the United States. In order to address this, we need more and better information. Unfortunately, the best place to start with this information is to learn about those that have already happened. It can’t bring back this baby, but we hope and pray it will help another baby and family in the future.
7. Why didn’t anyone tell me all these things?
This is a difficult subject that requires emotional discussion at a very vulnerable time. We can’t blame the families and the health care providers involved for not wanting to spend much time or energy on this. Most health care professionals receive little to no formal training on having these discussions with families. Most don’t know all the options or answers themselves. The important thing for them to know is that these families deserve all the information. When a family asks a question that you don’t know the answer to, it’s perfectly acceptable to admit you don’t know and start asking your colleagues until you find the answer. With teamwork, compassion, and willingness to have a difficult discussion, it is possible to allow these families to make decisions with all of the information.
If you are close to a family enduring this type of tragedy, please help them ask more questions and attempt to process the answers before making any decisions they might later regret. They can take their time to think about it, discuss with family and friends, and ask more questions.
If you have had a stillborn child, please consider taking our survey at this link. We are hoping to gather information about how families feel about autopsy and guide health care professionals, legislators, and researchers.
About the author:
Lindsey Wimmer, a Pediatric Nurse Practitioner, is Mom to four children; Garrett, stillborn in 2004, Grant, Bennett and Austyn. Lindsey and her husband Trent founded the Star Legacy Foundation shortly after Garrett’s birth when realizing that the numbers of stillbirths in the US were staggering and that very little was being done to determine the causes or find prevention initiatives. Visit the Star Legacy Foundation to learn more.