Vol 17, No 4 (2023)
Research paper
Published online: 2023-04-28

open access

Page views 593
Article views/downloads 285
Get Citation

Connect on Social Media

Connect on Social Media

This birth is difficult but beautiful — parents’ experience of giving birth to a baby with a lethal foetal diagnosis

Urszula Tataj-Puzyna1, Beata Szlendak2, Magdalena Szabat3, Joanna Krzeszowiak4, Dorota Sys5
Palliat Med Pract 2023;17(4):225-232.

Abstract

Introduction: The experience of childbirth, during which parents welcome and say goodbye to their child at the same time, is an unimaginably difficult/traumatic experience. This study aims to explore parents’ experiences following the birth of a terminally ill baby.

Material and methods: Semi-structured, in-depth interviews were conducted in this qualitative study. The interviews were developed using content analysis, by coding and constructing themes in iterative, collaborative meetings, using the MAXQDA tool. Thirteen parents took part in the study: nine women following a prenatal diagnosis with a lethal prognosis for their child and four fathers of those children.

Results: Content analysis revealed two main themes and two sub-themes. The first theme is “Embracing bad news during pregnancy” and the second theme is “This birth is difficult but beautiful”, within which the following sub-themes were identified: “Joy of meeting the baby” and “Saying goodbye to your child is important”.

Conclusions: For parents who were preparing for childbirth after prenatal diagnosis with a lethal prognosis for their child, the experience of childbirth had positive implications. Meeting their newborn child was an important moment for them, an affirmation of their parenthood. Parents emphasised that the time to say goodbye to their child was a celebration of their brief parenthood.

Article available in PDF format

View PDF Download PDF file

References

  1. Held V. Birth and Death. Ethics. 1989; 99(2): 362–388.
  2. Larkin P, Begley CM, Devane D. Women's experiences of labour and birth: an evolutionary concept analysis. Midwifery. 2009; 25(2): e49–e59.
  3. Simkin P. Just another day in a woman's life? Part II: Nature and consistency of women's long-term memories of their first birth experiences. Birth. 1992; 19(2): 64–81.
  4. Aune I, Marit Torvik H, Selboe ST, et al. Promoting a normal birth and a positive birth experience — Norwegian women's perspectives. Midwifery. 2015; 31(7): 721–727.
  5. McKenzie-McHarg K, Ayers S, Ford E, et al. Post-traumatic stress disorder following childbirth: an update of current issues and recommendations for future research. J Reprod Infant Psychol. 2015; 33(3): 219–237.
  6. Beck CT, Records K, Rice M. Further development of the postpartum depression predictors inventory-revised. J Obstet Gynecol Neonatal Nurs. 2006; 35(6): 735–745.
  7. John V. ‘A labour of love?’: mothers and emotion work. Br J Midwifery. 2009; 17(10): 636–640.
  8. Lundgren I, Karlsdottir S, Bondas T. Long-term memories and experiences of childbirth in a Nordic context — a secondary analysis. Int J Qual Stud Health Well-Being. 2009; 4(2): 115–128.
  9. Berg M, Lundgren I, Hermansson E, et al. Women's experience of the encounter with the midwife during childbirth. Midwifery. 1996; 12(1): 11–15.
  10. Lundgren I, Berg M. Central concepts in the midwife-woman relationship. Scand J Caring Sci. 2007; 21(2): 220–228.
  11. Menage D, Bailey E, Lees S, et al. Women's lived experience of compassionate midwifery: Human and professional. Midwifery. 2020; 85: 102662.
  12. Warland J, O'Leary J, McCutcheon H, et al. Parenting paradox: parenting after infant loss. Midwifery. 2011; 27(5): e163–e169.
  13. Downe S, Schmidt E, Kingdon C, et al. Bereaved parents' experience of stillbirth in UK hospitals: a qualitative interview study. BMJ Open. 2013; 3(2).
  14. Cacciatore J, Rådestad I, Frederik Frøen J. Effects of contact with stillborn babies on maternal anxiety and depression. Birth. 2008; 35(4): 313–320.
  15. Erlandsson K, Warland J, Cacciatore J, et al. Seeing and holding a stillborn baby: mothers' feelings in relation to how their babies were presented to them after birth--findings from an online questionnaire. Midwifery. 2013; 29(3): 246–250.
  16. Rådestad I, Westerberg A, Ekholm A, et al. Evaluation of care after stillbirth in Sweden based on mothers' gratitude. Br J Midwifery. 2011; 19(10): 646–652.
  17. Ratislavová K. Visual and haptic contact of women with a stillborn baby. J Nurs Soc Stud Public Health Rehabil. 2015(3–4): 135–140.
  18. Kelley MC, Trinidad SB. Silent loss and the clinical encounter: Parents' and physicians' experiences of stillbirth-a qualitative analysis. BMC Pregnancy Childbirth. 2012; 12: 137.
  19. Frøen JF, Cacciatore J, McClure EM, et al. Lancet's Stillbirths Series steering committee. Stillbirths: why they matter. Lancet. 2011; 377(9774): 1353–1366.
  20. Goldenberg RL, McClure EM, Bhutta ZA, et al. Lancet's Stillbirths Series steering committee. Stillbirths: the vision for 2020. Lancet. 2011; 377(9779): 1798–1805.
  21. Lawn JE, Blencowe H, Pattinson R, et al. Lancet's Stillbirths Series steering committee. Stillbirths: Where? When? Why? How to make the data count? Lancet. 2011; 377(9775): 1448–1463.
  22. McIntosh MJ, Morse JM. Situating and constructing diversity in semi-structured interviews. Glob Qual Nurs Res. 2015; 2: 2333393615597674.
  23. Sandelowski M. Whatever happened to qualitative description? Research Nurs Health. 2000; 23(4): 334–340, doi: 10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g.
  24. Biggerstaff D, Thompson A. Interpretative phenomenological analysis (IPA): a qualitative methodology of choice in healthcare research. Qual Res Psychol. 2008; 5(3): 214–224.
  25. Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure. J Phenomenol Psychol. 1997; 28(2): 235–260.
  26. O'Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014; 89(9): 1245–1251.
  27. Askelsdóttir B, Conroy S, Rempel G. From diagnosis to birth: parents' experience when expecting a child with congenital anomaly. Adv Neonatal Care. 2008; 8(6): 348–354.
  28. Côté-Arsenault D, Denney-Koelsch E. "Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med. 2016; 154: 100–109.
  29. Lalor J, Begley CM, Galavan E. Recasting Hope: a process of adaptation following fetal anomaly diagnosis. Soc Sci Med. 2009; 68(3): 462–472.
  30. Cacciatore J, Bushfield S. Stillbirth: the mother's experience and implications for improving care. J Soc Work End Life Palliat Care. 2007; 3(3): 59–79.
  31. Cortezzo DE, Bowers K, Cameron Meyer M. Birth planning in uncertain or life-limiting fetal diagnoses: perspectives of physicians and parents. J Palliat Med. 2019; 22(11): 1337–1345.
  32. Côté-Arsenault D, Krowchuk H, Hall WJ, et al. We want what's best for our baby: prenatal parenting of babies with lethal conditions. J Prenat Perinat Psychol Health. 2015; 29(3): 157–176.
  33. Lamberg Jones E, Leuthner SR. Interdiscilinary perinatal palliative care coordination, birth planning and support of the team. In: Denney-Koelsch E, Côté-Arsenault D. ed. Perinatal Palliative Care: A Clinical Guide. Springer Nature, Switzerland AG 2020: 333–355.
  34. Kennedy HP, Shannon MT, Chuahorm U, et al. The landscape of caring for women: a narrative study of midwifery practice. J Midwifery Womens Health. 2004; 49(1): 14–23.
  35. Larkin P, Begley CM, Devane D. Women's experiences of labour and birth: an evolutionary concept analysis. Midwifery. 2009; 25(2): e49–e59.
  36. Hunter B. The importance of reciprocity in relationships between community-based midwives and mothers. Midwifery. 2006; 22(4): 308–322.
  37. Mucha Z, Szlendak B, Krzeszowiak J, et al. Midwives' experience of delivering women with a life-threatening foetal diagnosis. Palliat Med Prac. 2023.
  38. Kuchemba-Hunter J. Compassion and community in perinatal palliative care: understanding the necessity of the patient perspective through narrative illustration. J Palliat Care. 2019; 34(3): 160–163.