Most Often Asked Questions about Stillbirth Evaluation

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.). [WiSSP affiliates see Additional Comments on Frequently Asked Questions.]

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 if necessary for up to 24 hours if the baby's body is kept cooled (I.e. in the morgue) 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 will living cells be obtained. Samples should be taken as soon as possible and preferably within a couple of hours after delivery; and they should be shipped to the cytogenetics laboratory as soon as possible since shipment delays also are correlated with growth failure.

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. However, someone must be available who can takes tissue samples (other than those to be obtained at the time of autopsy). Tissues can be left in tissue culture medium at room temperature or refrigerated but not frozen until shipped on Monday morning. While not optimal, such delays in shipment are inevitable. [WiSSP affiliates see Additional Comments on Frequently Asked Questions.]

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?
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. Certain publications notwithstanding, one cannot predict success or failure of cultures on the basis of external macerative criteria. 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.

It is particularly important to sample fetal placenta under those circumstances since these cells tend to survive longer after fetal death. (See Placental and Cord Examination.)

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 can not be obtained, one can use sterile saline for shipment.

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. [WiSSP affiliates see Additional Comments on Frequently Asked Questions.]

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. It is wise for any institution establishing a stillbirth assessment program to antecedently identify who will be responsible for reviewing all of the information and rendering a diagnostic opinion. [WiSSP affiliates see Additional Comments on Frequently Asked Questions.]

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 3 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. [WiSSP affiliates see Additional Comments on Frequently Asked Questions.]

12. How often will a specific cause of death be found?
In the WiSSP series, about 40% of evaluations allowed reasonable certainty in ascribing a specific cause of death. This is comparable to other, hospital based series in the literature (if a hodge-podge of non-specific categories such as 'hypoxia' and 'prematurity' are not included as really indicative of the cause of death). Of these, a majority are fetal causes -- birth defects, malformational syndromes etc., while fewer are secondary to placental, cord, maternal or environmental problems.

13. How much will all of this cost?
Different approaches can be made to estimating cost. This is more fully discussed in WiSSPers, vol. 4, no. 1,. If one considers real costs (in contrast to customary charges), then a reasonable estimate of costs includes:

14. Who pays for these evaluations?
Different institutions and different health care delivery structures will have different answers to this questions.

In a fee for service setting, third party payers will often cover all of the evaluations if they are billed to the mother's hospital stay. Coverage for postmortem charges are more likely if they are billed as 'comprehensive evaluation of products of conception' or similar (since the stillborn has no legal standing and no coverage).

In a managed care structure, efforts will have to antecedently be made to assure that such evaluations are viewed as essential and routine. The added cost to insure that every stillbirth is assessed would be about $8.00 per normal delivery. This translates into only about 11¢ per covered life per year.

In those with no insurance or who are underinsured and who are not covered by a managed care program, much of the assessment can be completed without cost to the parents if the birthing hospital is willing to 'forgive' the costs of the evaluations as a good will gesture. In addition, some University-affiliated cytogenetics laboratories will forgive those costs not covered by insurance so long as arrangements are made beforehand.

[WiSSP affiliates see Additional Comments on Frequently Asked Questions.]

15. 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. (A list of Wisconsin Support Groups is included in this Web site as well).

16. Is there any source for resource materials and literature appropriate for parents?
See the WiSSP Resource Library on this web site. Each issue of WiSSPers includes review of selected resources. Materials directly available from WiSSP are listed on the Order Form of this web site.

17. 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 (updated quarterly) from the medical literature. Materials directly available from WiSSP are listed on the Order Form of this web site.

18. 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 (see list of educational materials that might help on our Order Form). 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 (modaff@waisman.wisc.edu) or by postal mail (Wisconsin Stillbirth Service Program, Clinical Genetics Center, University of Wisconsin-Madison, 1500 Highland Avenue #343, Madison, WI 53705).

19. But we don't have a…
"But we don't have a pediatric pathologist, or a pediatric radiologist, or a geneticist, or a genetics counselor, or an obstetrical nurse practitioner, or a bereavement program, 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.

20. HELP!
If all else fails and you really need help contact us by e-mail (modaff@waisman.wisc.edu) or by postal mail (Wisconsin Stillbirth Service Program, Clinical Genetics Center, University of Wisconsin-Madison, 1500 Highland Avenue #343, Madison, WI 53705). We will try to respond to all relevant professional inquiries. (WiSSP affiliated institutions can find a list of telephone numbers in the "Twenty Questions Most Often Asked about Stillbirth Evaluation" section, question #20 of the protocol packets at your institution).

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