Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Article
  • Published:

“We want to do everything”: how parents represent their experiences with maternal–fetal surgery online

Journal of Perinatology volume 38, pages 226–232 (2018)Cite this article

Subjects

Abstract

Objective

There is little available evidence on how patients make decisions regarding maternal–fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions.

Study design

We used Google search strings and a purposive snowball method to locate patient blogs. We analyzed blog entries using qualitative methods to identify author details, medical information, and common themes.

Results

We located 32 blogs of patients who describe maternal–fetal surgery consultation. Twenty-eight (88%) underwent fetal interventions. Most (91%) explicitly described consultation with maternal–fetal surgery teams; 83% of those depicted making decisions prior to formal consultation. Few expressed regret for decisions made (6%).

Conclusions and relevance

Patients openly share experiences with maternal–fetal surgery online. Women portray their decisions as made outside of formal medical processes and overwhelmingly feel these decisions were “right”. As the field of maternal–fetal surgery expands, prospective evaluation of patient decision-making is needed.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Hui L, Bianchi DW. Recent advances in the prenatal interrogation of the human fetal genome. Trends Genet. 2013;29:84–91.

    Article  CAS  PubMed  Google Scholar 

  2. Griffiths PD, Bradburn M, Campbell MJ, Cooper CL, Graham R, Jarvis D, et al. Use of MRI in the diagnosis of fetal brain abnormalities in utero (MERIDIAN): a multicentre, prospective cohort study. Lancet. 2017;389:538–46.

    Article  PubMed  Google Scholar 

  3. Adzick NS, Thom EA, Spong CY, Brock JW III, Burrows PK, Johnson MP, et al. A randomized trial of prenatal versus postnatal repair of myelomeningocele. New Engl J Med. 2011;364:993–1004.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  4. Chescheir NC. Maternal–fetal surgery: where are we and how did we get here? Obstet & Gynecol. 2009;113:717–31.

    Article  Google Scholar 

  5. Harrison MR. Fetal surgery: trials, tribulations, and turf. J Pediatr Surg. 2003;38:275–82.

    Article  PubMed  Google Scholar 

  6. Hartmann KE, McPheeters ML, Chescheir NC, Gillam-Krakauer M, McKoy JN, Jerome R, et al. Evidence to inform decisions about maternal–fetal. Surg: Tech Brief Obstet & Gynecol. 2011;117:1191–204.

    Google Scholar 

  7. Kitagawa H, Pringle K Fetal surgery: a critical review. Pediatr Surg Int. 2017;33:1–13.

  8. Obstetricians ACo, Gynecologists, Pediatrics AAo, Bioethics Co. Maternal-fetal intervention and fetal care centers. Pediatrics. 2011;128:e473–e8.

    Article  Google Scholar 

  9. Al-Refai A, Ryan G, Van Mieghem T. Maternal risks of fetal therapy. Curr Opin Obstet Gynecol. 2017;29:80–4.

    Article  PubMed  Google Scholar 

  10. Longaker MT, Golbus MS, Filly RA, Rosen MA, Chang SW, Harrison MR. Maternal outcome after open fetal surgery: a review of the first 17 human cases. JAMA. 1991;265:737–41.

    Article  CAS  PubMed  Google Scholar 

  11. Wilson RD, Johnson MP, Flake AW, Crombleholme TM, Hedrick HL, Wilson J, et al. Reproductive outcomes after pregnancy complicated by maternal-fetal surgery. Am J Obstet Gynecol. 2004;191:1430–6.

    Article  PubMed  Google Scholar 

  12. Bliton MJ. Parental hope confronting scientific uncertainty: a test of ethics in maternal-fetal surgery for spina bifida. Clin Obstet Gynecol. 2005;48:595–607.

    Article  PubMed  Google Scholar 

  13. Lyerly AD, Little MO, Faden RR. A critique of the ‘fetus as patient’. Am J Bioeth. 2008;8:42–4.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Antiel RM, Adzick NS, Thom EA, Burrows PK, Farmer DL, Brock JW, et al. Impact on family and parental stress of prenatal vs postnatal repair of myelomeningocele. Am J Obstet Gynecol. 2016;215:522. e1–. e6.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Hawkins CM, DeLaO AJ, Hung C. Social media and the patient experience. J Am Coll Radiol. 2016;13:1615–21.

    Article  PubMed  Google Scholar 

  16. DeHoff BA, Staten LK, Rodgers RC, Denne SC. The role of online social support in supporting and educating parents of young children with special health care needs in the United States: a scoping review. J Med Internet Res. 2016;18:e333.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Janvier A, Farlow B, Wilfond BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012;130:293–8.

    Article  PubMed  Google Scholar 

  18. Jacobs R, Boyd L, Brennan K, Sinha C, Giuliani S. The importance of social media for patients and families affected by congenital anomalies: a Facebook cross-sectional analysis and user survey. J Pediatr Surg. 2016;51:1766–71.

    Article  PubMed  Google Scholar 

  19. Wittmeier K, Holland C, Hobbs-Murison K, Crawford E, Beauchamp C, Milne B, et al. Analysis of a parent-initiated social media campaign for Hirschsprung’s disease. J Med Internet Res. 2014;16:e288.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Worthen M, Leonard TH, Blair TR, Gupta N. Experiences of parents caring for infants with rare scalp mass as identified through a disease-specific blog. J Am Board Fam Med. 2015;28:750–8.

    Article  PubMed  Google Scholar 

  21. Schlesinger M, Grob R, Shaller D, Martino SC, Parker AM, Finucane ML, et al. Taking patients’ narratives about clinicians from anecdote to science. Mass Med Soc; 2015;373:675–9

  22. Kadry B, Chu LF, Kadry B, Gammas D, Macario A. Analysis of 4999 online physician ratings indicates that most patients give physicians a favorable rating. J Med Internet Res 2011;13:e95

  23. Thoren EM, Metze B, Bührer C, Garten L. Online support for parents of preterm infants: a qualitative and content analysis of Facebook ‘preemie’groups. Arch Dis Child-Fetal Neonatal Ed. 2013;98:F534–8.

    Article  PubMed  Google Scholar 

  24. Bekker HL, Winterbottom AE, Butow P, Dillard AJ, Feldman-Stewart D, Fowler FJ, et al. Do personal stories make patient decision aids more effective? A critical review of theory and evidence. BMC Med Inform Decis Mak. 2013;13:S9.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Bryant A, Charmaz K. The Sage handbook of grounded theory: Sage Publications, LTD, in London, UK, 2007.

  26. Chervenak FA, McCullough LB. Ethics of maternal–fetal surgery. Seminars in fetal and neonatal medicine; 2007;12:426–31

  27. Lyerly AD, Mahowald MB. Maternal-fetal surgery: the fallacy of abstraction and the problem of equipoise. Health Care Anal. 2001;9:151–65.

    Article  CAS  PubMed  Google Scholar 

  28. Chervenak FA, McCullough LB. An ethically justified framework for clinical investigation to benefit pregnant and fetal patients. Am J Bioeth. 2011;11:39–49.

    Article  PubMed  Google Scholar 

  29. Lyerly AD, Gates EA, Cefalo RC, Sugarman J. Toward the ethical evaluation and use of maternal-fetal surgery. Obstet & Gynecol. 2001;98:689–97.

    CAS  Google Scholar 

  30. Smajdor A. Ethical challenges in fetal surgery. J Med Ethics. 2010;37:88–91.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Sandelowski M, Barroso J. The travesty of choosing after positive prenatal diagnosis. J Obstet, Gynecol, & Neonatal Nurs. 2005;34:307–18.

    Article  Google Scholar 

  32. Knibbe M, Verkerk M. Making sense of risk. Donor risk communication in families considering living liverdonation to a child. Med Health Care Philos. 2010;13:149–56.

    Article  PubMed  Google Scholar 

  33. Crowley‐Matoka M, Siegler M, Cronin DC. Long‐term quality of life issues among adult‐to‐pediatric living liver donors: a qualitative exploration. Am J Transplant. 2004;4:744–50.

    Article  PubMed  Google Scholar 

  34. Edmonds BT, McKenzie F, Panoch JE, Barnato AE, Frankel RM. Comparing obstetricians’ and neonatologists’ approaches to periviable counseling. J Perinatol. 2015;35:344.

    Article  Google Scholar 

  35. Brown SD, Feudtner C, Truog RD. Prenatal decision-making for myelomeningocele: can we minimize bias and variability? Pediatrics. 2015;136:409–11.

    Article  PubMed  Google Scholar 

  36. Brown SD, Lyerly AD, Little MO, Lantos JD. Paediatrics-based fetal care: unanswered ethical questions. Acta Paediatr. 2008;97:1617.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Brown SD, Truog RD, Johnson JA, Ecker JL. Do differences in the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists positions on the ethics of maternal–fetal interventions reflect subtly divergent professional sensitivities to pregnant women and fetuses? Pediatrics. 2006;117:1382–7.

    Article  PubMed  Google Scholar 

  38. Antiel RM, Flake AW, Johnson MP, Khalek N, Rintoul NE, Lantos JD, et al. Specialty-based variation in applying maternal-fetal surgery trial evidence. Fetal Diagn Ther. 2017;42:210–7.

    Article  PubMed  Google Scholar 

  39. Lemmon ME, Donohue PK, Parkinson C, Northington FJ, Boss RD. Communication challenges in neonatal encephalopathy. Pediatrics. 2016;138:e20161234.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

We would like to thank Dr. Annie Janvier, Dr. Anne Drapkin Lyerly, and Dr. Ryan Antiel for insightful discussions related to this topic.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Jessica T. Fry & Joel E. Frader

  2. Division of Neonatology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Jessica T. Fry

  3. Division of Palliative Care, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Joel E. Frader

Authors
  1. Jessica T. Fry
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Joel E. Frader
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jessica T. Fry.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Fry, J.T., Frader, J.E. “We want to do everything”: how parents represent their experiences with maternal–fetal surgery online. J Perinatol 38, 226–232 (2018). https://doi.org/10.1038/s41372-017-0040-4

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41372-017-0040-4

This article is cited by

Search

Advanced search

Quick links