Most Often Asked Questions about Stillbirth Evaluation
1. Stillbirths are defined as 20 weeks gestation or more; what about babies less than twenty weeks gestation -- should they be evaluated?
While most of the literature is based on evaluation of stillbirths, experience in WiSSP, which has always accepted fetuses from 13 weeks onwards, is that the percentage of recognizable causes of death is the same for second trimester miscarriages as for stillbirths after 20 weeks. All parts of the protocol are relevant to fetuses from 13 weeks onwards. X-rays of small fetuses can sometimes be done in the mammography unit. Every fetus regardless of gestational age should have the same opportunity for evaluation. In the absence of a viable fetus WiSSP evaluation is not appropriate, but products of conception should be sent for cytogenetics.
2. What about liveborn babies dying in the first 24 hours who have malformations -- should they be similarly evaluated?
Although the intent of WiSSP is the evaluation of stillborns, the same diagnostic tools seem quite helpful in evaluating early neonatal deaths under two circumstances: in infants with obvious malformations; in infants for whom there is no other reasonable clinical cause of death evident (such as extreme prematurity, respiratory distress syndrome etc.).
3. How harmful are delays in proceeding with the protocol after the delivery of a stillborn?
Short delays (such as those to allow viewing or holding of the infant by the parents) will not interfere with appropriate evaluation. In fact, most of the evaluations can be delayed for at least 24 hours if the baby's body is kept cooled (i.e. in the morgue, except when being held by parents) and no embalming or fixation is performed during this time. Time is most crucial in obtaining samples for chromosomal study. For this, the longer the delay the less likely living cells will be obtained. Samples should be taken as soon as possible and preferably within a couple of hours after delivery; and they should be processed in the birthing hospital’s cytogenetics laboratory as soon as possible. If chromosomal samples are obtained from the placenta, there is less urgency for fetal evaluation which allows the family more time with their infant.
4. What special problems should be anticipated when babies are stillborn over a weekend?
The major difficulties usually are related to delays, decisions about shipment of samples and unavailability of key individuals. As noted in questions 3 delays of up to 24 hours prior to photographs, x-ray evaluation and post mortem examination are acceptable if unavoidable. Tissues from the placenta can be left in tissue culture medium at room temperature or refrigerated but not frozen until processed on Monday morning. While not optimal, such delays are inevitable.
5. What if parents decline autopsy of their baby -- what then can be done?
Virtually everything else can be accomplished with formal post mortem. While certain things will be missed (most frequently 'silent' malformations such as kidney and hear abnormalities), many diagnoses crucial in subsequent counseling of families can be established with formal autopsy. Clinical examination, photographs, x-rays and cytogenetic testing will often yield information sufficient to make a specific diagnosis. Methods for obtaining samples for cytogenetic studies under these circumstances are summarized in the section of the protocol dealing with Sampling for Chromosomal Evaluation. Obviously, placental examination should also be completed even if an autopsy is declined.
6. Is it really worthwhile to take samples for chromosome studies in markedly macerated infants?
It is particularly important in these cases to sample fetal placenta since these cells tend to survive longer after fetal death (See Placental and Cord Evaluation ). For non-placental samples, yield is less. In infants evaluated through WiSSP about 60% of samples from babies with no, slight, or mild maceration were successfully grown, while only about 35% of those babies with moderate or advanced maceration yielded viable cells. With fluorescent in situ hybridization (FISH) and new techniques such as chromosomal microarray, valuable information can be obtained even when cells fail to grow in the laboratory. The effort to obtain tissue samples in macerated stillborns is worth it since it is just those babies in whom external stigmata of chromosomal abnormalities may be masked.
7. What if tissue culture medium is unavailable?
Samples for chromosomal analysis can still be taken. We suggest drawing maternal blood in a sterile tube, spinning it down and using the plasma or serum as transport medium for the fetal tissue samples. Studies suggest that this is considerably more successful than the use of sterile saline. If maternal serum cannot be obtained, one can use sterile saline but it is then important to transfer the sample to transport medium as soon as possible.
8. What if only parts of the protocol can be completed -- is it still worthwhile?
Yes. Of course, the less that is done in evaluating a baby, the less the likelihood that specific answers will be found.
9. Who interprets the results of the evaluations?
With respect to fetal causes of stillbirth, it is usually a clinical geneticist or dysmorphologist (see Access to Genetic Counseling Services) who will be best able to interpret the results of the investigations completed. Sometimes it will be a perinatologist or obstetrician who has developed special interest in the diagnostic assessment of stillborns. Information sent to WiSSP will be interpreted by the WiSSP director, a clinical geneticist with special interest and experience in stillbirth evaluation, and a summary letter will be sent to the referring physician.
10. How long before results and interpretations are available?
For WiSSP the average time between birth of a stillborn infant and completion of a summary letter to the attending physician has been about 2 months. This delay is primarily the result of inevitable delays in receiving the final autopsy dictation and/or the time necessary to successfully grow cells and perform cytogenetic evaluation. Parents should be made aware of this inevitable delay in providing final results to them.
11. How should parents be informed about the results of evaluation?
All families should receive at least a written summary of the results of assessment. It is far better if they are counseled in person. Some attending physicians will prefer to counsel the parents themselves. Different institutions may have individuals of varying backgrounds (e.g. obstetrician, pathologist, genetics counselor, nurse practitioner etc.) who have developed special expertise to whom families can be referred. Alternatively the parents can be referred for consultation through a clinical genetics service (see Access to Genetic Counseling Services). Referral for genetics consultation is particularly appropriate when malformations have been identified in the baby and in those circumstances in which additional extensive family evaluation seems warranted.
12. How often will a specific cause of death be found?
In the WiSSP series, a recent study found 70% of cases examined identified an independent cause sufficient to explain the infant demise. In 95% of cases, at least one cause or non-causal abnormality was identified. Another recent study has examined multiple approaches to investigating stillbirths (including WiSSP) and has estimated that a cause of death is found between 70% and 95% of the time.
13. How much will all of this cost?
There are no costs for evaluations referred to WiSSP. A client may possibly be charged if the autopsy is completed somewhere other than the birthing hospital. Laboratory studies on placenta, including karyotype, are usually covered by the mother’s health insurance.
14. Is there information and support available for parents?
Many hospitals have parent support groups, bereavement counseling and/or individuals with particular interest in providing emotional help for parents. Referral to local resources can be made through national Support Organizations.
15. Is there any source for resource materials and literature appropriate for parents?
See the WiSSP Resource Library on this web site.
16. What about scientific literature and resources for health care professionals?
Each issue of WiSSPers includes critical reviews of recent scientific publications concerning stillbirth. In addition, the Citations to Recent Literature section of this web site lists relevant resources from the medical literature.
17. We want to begin to offer stillbirth evaluations in our institution. But we are not part of the WiSSP network. How do we begin?
It takes time and lots of effort, but it is worth it if you succeed in helping parents who have experienced a stillbirth. Education of the staff of the institution is a critical first step. All relevant parties -- delivering physicians, pathologists, obstetrical unit nurses, bereavement personnel and administrators -- need to be made aware of the importance of such evaluation. In many hospitals, establishing an assessment program will require the official endorsement of some hospital committee (e.g. obstetrical committee). Key individuals willing to act as resource persons need then to be identified. Decisions will need to be made about protocols to use; obviously we think the Protocol included in this web site are appropriate models of those that any birthing hospital can use. Who does what will also have to be formalized -- i.e. who takes the pictures and with what camera, who carries out external clinical evaluation, who takes tissue samples, how do radiographs get taken, which pathologist is used, which cytogenetics laboratory should receive samples etc. These details will differ for every birthing hospital.
Perhaps most challenging, some physician with expertise (or a willingness to develop it) must be identified as the referent physician for assessment and interpretation of all the studies once they are completed. More nascent programs have failed because of the absence of such a person than for any other. By prior arrangement WiSSP is willing to provide consultation to programs regarding particularly problematic or difficult to interpret outcomes of evaluations. Inquiries concerning such consultation should be made by e-mail at firstname.lastname@example.org or by postal mail (Wisconsin Stillbirth Service Program, Medical Genetics, Marshfield Clinic, 1000 North Oak Avenue, Marshfield, WI 54449).
18. But we don't have a…
"But we don't have a pediatric pathologist, or a pediatric radiologist, or a geneticist, or a genetic counselor, or an obstetrical nurse practitioner, or a bereavement program, or a cytogenetics laboratory, or a camera, or a billing mechanism, or a sympathetic administration…or whatever." Commitment, organization and improvisation will work regardless of the hurdles. Someone has to begin the process.
If all else fails and you really need help contact us by e-mail at email@example.com or by postal mail (Wisconsin Stillbirth Service Program, Medical Genetics, Marshfield Clinic, 1000 North Oak Avenue, Marshfield, WI 54449). We will try to respond to all relevant professional inquiries.
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