Finding Answers

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If your baby has died unexpectedly, your health provider may ask you to consider additional testing to help learn what happened.  This information is designed to answer common questions that may help you in this decision. 

Testing Options
Evaluation of your baby’s death can include a variety of tests.  You may agree to all of the tests or any combination that is comfortable to you.  The tests offered may vary depending on your health, family history, the gestational age of your baby, or any previous losses.  

– Detailed pregnancy history
Mothers and partners may know about recent trauma, new exposures, or strange symptoms.  Any detail may be helpful. 

– Physical examination of the baby
This evaluation is not invasive and is a normal newborn examination.  It will look for physical abnormalities and symptoms of genetic conditions.  

– Maternal blood tests
Most commonly, these tests will be looking for signs of infection, blood type incompatibility with the baby, autoimmune disorders, diabetes, substances that can affect the baby, or other maternal health conditions. 

– Placenta and umbilical cord pathology
Whenever there is a poor outcome in pregnancy, the placenta should be evaluated.  The placenta is the primary organ for the baby as he/she is developing.  The umbilical cord is the baby’s lifeline to oxygen and nutrients.  Abnormalities may reduce the blood flow from the mother and placenta to the baby.  A pathologist will look at the physical characteristics of the placenta including its size and weight.  Clots, areas of damage, or areas of poor blood flow may be noted.  He/she will take small slices of the placenta to be evaluated under the microscope.  The pathologist will also evaluate the umbilical cord looking for areas of abnormal development or insertion into the placenta, abnormal coiling, knots, cysts, or other areas of concern noted by the health professionals during delivery.  

– Medical imaging
An ultrasound may be done before your baby is delivered to confirm the baby’s death and to evaluate amniotic fluid, baby, placenta, and umbilical cord.  Some facilities offer CT or MRI imaging of babies to look for possible causes of death.  This may be particularly helpful if there are concerns about the baby’s brain or a full autopsy is not being done.  

– Genetic testing
Karyotype and microarray are the two most common types of genetic tests.  Microarray is preferred as it gives more detailed information and does not require living tissue.  This can give the family more time with baby before testing is completed.  

– Partial autopsy
If a family does not want specific parts of the body to be disturbed, a partial autopsy is an option.  Parents should discuss their concerns with the health provider. 

– Full autopsy
In a full autopsy, a pathologist will note any abnormalities of the baby and look at the internal organs through surgical incisions in the chest and back of the skull.  Unless specifically noted, organs are returned to the body and the incisions are closed with stitches.  The pathologist may remove a small sliver of tissue from specific organs to be evaluated under a microscope.  

The testing recommended by your health professional may vary.  In general, tests that are found to be most helpful include a detailed pregnancy history, placenta/umbilical cord pathology, autoimmune testing, and full autopsy.  

Most testing can be completed within 1-2 days.  Some test results will be available within a few days, but many will take several weeks.  Ask your health provider when they expect to have the results and schedule an appointment to meet him/her to review them.  

Common Concerns
There are many reasons a family may choose not to investigate the cause of their baby’s death.  Some of the most common include:
– cultural or religious preferences
– lack of information needed to make a decision
– concern about how baby will be treated
– cost
– fear that nothing will be learned
– feeling that it won’t change anything

If you have cultural or religious traditions that require specific timing of burial, please tell your health provider.  In some cases, it is possible to complete the testing within the needed time frame.  If your traditions limit what can be done to a deceased person’s body, you should also discuss this with your health professionals.  

If you have any unanswered questions about testing, don’t hesitate to ask.  You should not be rushed to make this decision and you deserve all the information you need to make a decision that is comfortable for you.  

If you want to see your baby after testing or have an open-casket memorial service, tell your provider and the pathologist.  If you have any questions or special requests, the health preofessionals will let you know if they are able to meet your needs.  In most cases, they are very flexible and willing to do what the family desires.  

If cost is a concern, there are organizations that may be able to help with the expense and some health facilities have programs in place to minimize the cost fo families. Ask your provider for the estimated costs or call your insurance company to learn what your policy will cover.  

It is true that a cause of death is never found for many babies who are stillborn, miscarried, or die shortly after birth.  Even if all recommended testing is completed, you may not get an answer.  However, it can be very beneficial to know what did NOT cause a problem.  This is especially true when thinking about another pregnancy.  

It is also true that having any of these tests completed will not bring your baby back or fix your heartache.  Some families have expressed comfort in knowing they learned as much as possible.  This will not change the situation, but it may affect how you think about it in the future.  

Potential Benefits
Many families are happy with their decisino to have an autopsy or other testing.  The most common reasons are that it provides a sense of closure or eliminates potential causes of death that concerned them.  For families who may want to have more children in the future, learning as much as possible about this baby can help guide their care in subsequent pregnancies.  It may also help families determine if they should persue another pregnancy.  

Occassionaly, testing after a loss will identify a health concern for the mother that may affect her post-partum healing, future pregnancies, or future health.  

Some families find comfort knowing that what is learned about their baby could help researchers learn more about these tragedies and possibly how to prevent future families from this pain.  

Making Decisions
Take time to discuss all the options with your partner, family, or other trusted advisors.  Ask any questions you may have.  If you have special requests or concerns, commuity them to your health providers.  

Know that there are no right or wrong decisions.  We want to make sure you have all the information you need to make the best decision for you and your family.  

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