Mothers' Experiences From Prenatal Diagnosis to Home Following Congenital Diaphragmatic Hernia: A Qualitative Study

ABSTRACT

Aim

To explore the experiences of mothers who completed the care pathway following a diagnosis of congenital diaphragmatic hernia and identify implications for nursing and midwifery practice.

Design

A qualitative descriptive phenomenological study.

Methods

Semi‐structured interviews were conducted in February 2023 with 21 mothers who had completed the congenital diaphragmatic hernia care pathway between 2019 and 2022 at an academic referral hospital for fetal surgery in Northern Italy. Women whose pregnancy was not carried to term, those who experienced fetal or neonatal loss, and those receiving ongoing psychological support were not included. Data were analysed thematically using a descriptive phenomenological approach.

Results

Five themes were identified across diagnosis, decision‐making, specialised care, childbirth, and the postnatal transition home. Mothers experienced the pathway as interconnected transitions characterised by uncertainty, repeated adaptation, and changes in the maternal role. Specialist counselling improved clarity but did not eliminate prognostic uncertainty. Midwives emerged as central relational figures during childbirth, while mothers highlighted communication, parental involvement, continuity, and preparation for discharge.

Conclusion

Among mothers represented in this study, informational, emotional, relational, and practical needs evolved from prenatal diagnosis to home care but remained closely interconnected.

Implications for the Profession and/or Patient Care

Nursing and midwifery priorities may include reinforcing complex information, preparing women for childbirth and possible neonatal separation, facilitating parental involvement, and supporting readiness for home care.

Impact

The study addresses limited understanding of how maternal needs evolve across the congenital diaphragmatic hernia care continuum. Uncertainty, adaptation, and changes in the maternal role persisted across successive transitions. Findings may inform nursing, midwifery, and multidisciplinary support across fetal, maternity, neonatal, and community care.

Reporting Method

The COREQ checklist guided reporting.

Patient or Public Contribution

Mothers contributed as study participants by sharing their experiences; they were not involved in study design, analysis, or manuscript preparation.

1. Introduction

Congenital diaphragmatic hernia (CDH) is a fetal malformation characterised by a defect in the diaphragm that allows abdominal organs to herniate into the thoracic cavity (Kosiński and Wielgoś 2017). Occurring in approximately one in every 4000 newborns, CDH disrupts normal airway and pulmonary vascular development because of intrathoracic herniation, significantly increasing the risk of neonatal mortality (Williams and Greenough 2021). Despite advances in neonatal intensive care and surgical management, mortality and long‐term morbidity remain considerable (Wang et al. 2019). Prenatal ultrasound is well established for diagnosing CDH and characterising its anatomical features (Cordier et al. 2020). Ultrasound parameters, including the observed‐to‐expected lung‐to‐head ratio and liver position, together with fetal lung volume measured by magnetic resonance imaging when indicated, support prenatal risk stratification (Abbasi et al. 2024). In selected foetuses with isolated CDH and imaging findings predictive of severe pulmonary hypoplasia, fetoscopic endoluminal tracheal occlusion (FETO) may be considered in specialised fetal medicine centres (Basurto et al. 2019). FETO is a minimally invasive procedure performed via percutaneous access, involving the insertion of a balloon through the fetal mouth and trachea, which is then positioned and inflated above the carina (Chen et al. 2023). This procedure, performed directly within the maternal uterus, promotes the fetal lung growth compromised by the diaphragmatic defect (Chen et al. 2023). The balloon typically remains in place for approximately 6 weeks and is removed at 34 weeks of gestation in preparation for birth (Jiménez et al. 2017). Recent randomised trials, such as the TOTAL trial, and multi‐centre studies conducted in North America and Europe report that FETO improved survival to neonatal intensive care discharge compared with expectant management, although it also increased the risks of preterm prelabour rupture of membranes and preterm birth (Deprest et al. 2021; Kunpalin et al. 2025).

The prenatal diagnosis of CDH significantly alters the expectant mother's experience of pregnancy, placing her within a highly specialised fetal and perinatal care pathway characterised by persistent uncertainty regarding fetal prognosis, treatment, and survival. Although research has extensively investigated fetal and neonatal clinical outcomes associated with CDH (Pan et al. 2022; Petroze et al. 2019), the diagnosis and the possibility of fetal intervention also have substantial emotional, informational, and practical implications for women and their families. Mothers may experience considerable anxiety and distress from the time of diagnosis, throughout pregnancy and childbirth, and during the neonatal period, with symptoms occasionally reaching clinically significant levels (Aite et al. 2004; Teefey et al. 2020). Existing qualitative CDH research has described parental insecurity and experiences of care (Petit‐Steeghs et al. 2019), prenatal counselling and support needs (Crombag et al. 2022), and parent‐reported outcomes at different time points along the CDH trajectory (Taillieu et al. 2023). More recent work has also highlighted caregiver distress, parent–infant separation, and the value of peer support during hospitalisation and follow‐up (Dimmer et al. 2026). However, less attention has been given to how mothers experience the transitions between these phases and how informational, emotional, and relational needs evolve across the continuum from prenatal diagnosis and possible fetal intervention to childbirth, neonatal care, and the return home, particularly within the Italian healthcare context.

Furthermore, although continuity of care, clear communication, shared decision‐making, care coordination, and emotional support are recognised components of family‐centred perinatal care, evidence remains limited regarding how these elements are experienced and delivered across complex pathways following a prenatal diagnosis of congenital anomaly, particularly when specialised fetal or neonatal treatment is required (Baart et al. 2025; Psaila et al. 2023). In CDH specifically, recent work has focused mainly on parental counselling and support needs, whereas the nursing‐ and midwifery‐relevant needs that emerge across successive transitions from prenatal diagnosis to childbirth, neonatal care, and home remain insufficiently defined (Lof et al. 2026). Clarifying these needs may identify points at which nursing and midwifery care can strengthen informational and relational continuity, support maternal adaptation and involvement, and facilitate transitions across the care pathway. Accordingly, this study aimed to explore the experiences and perceptions of mothers who completed the care continuum following a prenatal diagnosis of CDH and to identify implications for multidisciplinary coordination and nursing and midwifery practice.

2. Methods

2.1. Study Design

This study used a qualitative descriptive phenomenological design to explore mothers' experiences of the care pathway following a prenatal diagnosis of CDH (Sundler et al. 2019). The study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (Tong et al. 2007).

2.2. Recruitment and Participants

All women referred to the Prenatal Diagnosis and Fetal Surgery Department of Fondazione IRCCS Ca′ Granda Ospedale Maggiore Policlinico in Milan (Italy) were screened for eligibility. The study was conducted at a high‐volume academic referral hospital recording approximately 6000 births annually and providing multidisciplinary care for complex pregnancies, prenatal diagnosis, fetal surgery, and specialised neonatal and paediatric surgical care, including FETO for CDH. During the study period, 75 women carrying a fetus diagnosed with CDH were assessed for eligibility. The sampling period covered births from 2019 to 2022, while interviews were conducted in February 2023. Eligibility criteria were as follows: (a) women aged 18 years or older; (b) women able to understand and communicate in Italian; and (c) women who had completed the clinical care pathway for CDH. Women whose pregnancy was not carried to term, those who experienced fetal or neonatal loss, and those receiving ongoing psychological support were not invited to participate. The latter criterion was predefined to avoid imposing an additional research‐related burden on women who were receiving active psychological care.

2.3. Data Collection

The data collection process involved conducting semi‐structured interviews guided by a topic framework (Table 1) developed following a comprehensive literature review. Initially, eligible women were contacted via telephone and given up to 7 days to consider their participation. Upon agreeing to participate, they were sent an informed consent form via email, and an appointment was scheduled for a telephone or videoconference interview. Once eligibility had been confirmed and informed consent obtained, most interviews were conducted by video conference, with the remainder conducted by telephone. To ensure confidentiality, all sensitive clinical data were anonymised using alphanumeric participant codes. Interview recordings were securely stored in password‐protected files on a personal computer accessible only to the principal investigator. All interviews were conducted by the principal investigator (MT), a female midwife with extensive clinical experience in prenatal care and the management of high‐risk pregnancies. The principal investigator had no clinical involvement with the participants and no prior relationships with them. Participants were informed that the principal investigator was a researcher with clinical expertise in perinatal care, and that she was conducting the study to better understand maternal experiences.

TABLE 1.

Topic guide used to conduct participants interviews.

Section	Variables
Socio‐demographic data	Age (years) Marital status Citizenship Educational level Occupation Region of residence
Clinical data	Gestational age at CDH diagnosis Pregnancy course Mode of delivery Sex of the newborn
Interview – Part 1 Communication of the congenital diaphragmatic hernia diagnosis	Can you describe your experience when you were informed about the diagnosis? –Emotional reaction –Setting in which the diagnosis was communicated –Healthcare professional involved –Initial thoughts –Presence of your partner
Interview – Part 2 Communication and discussion about the therapeutic options	Can you describe your experience regarding the communication of the treatment pathway? Were you offered the options of surveillance, intervention, and/or termination of pregnancy?
Interview – Part 3 Pregnancy monitoring	What was your experience during pregnancy follow‐up visits at the hospital?
Interview – Part 4 Birth and post‐partum experience	Can you describe your experience at the time of your baby's birth?
Interview – Part 5 Postnatal experience	Can you tell me about your experience during the postpartum period? How did the return home with your baby go?

Interviews lasted approximately 20 min on average. A total of 21 interviews were completed. Data collection and preliminary analysis proceeded iteratively, allowing the researchers to consider the recurrence and breadth of relevant experiences across the dataset. Transcripts were not returned to participants for review or correction. Following each interview, the principal investigator completed reflective notes documenting initial impressions, emotional responses, and considerations regarding the interview process. These notes were revisited during analysis to support reflexivity and consideration of the potential influence of the researcher's perspectives on data interpretation. Interview recordings and study data were anonymised using alphanumeric participant codes and stored in password‐protected files accessible only to the principal investigator.

2.4. Data Analysis

Data were analysed using thematic analysis grounded in descriptive phenomenology (Sundler et al. 2019). Interviews were transcribed verbatim and transcripts were read repeatedly to develop an overall understanding of participants' accounts while maintaining openness to the meanings expressed in the data. Statements relevant to the study aim were identified through line‐by‐line examination of the transcripts and compared within and across participants. Meaningful statements describing related experiences were progressively grouped into thematic clusters. These clusters were subsequently compared and refined across the full dataset and organised into subthemes and overarching themes representing shared dimensions of mothers' experiences across the CDH care pathway. Throughout the analytical process, the researchers maintained a reflective attitude and critically considered their pre‐understandings and potential influence on interpretation. Initial data organisation and thematic development were undertaken by the principal investigator. A second researcher (CG) independently cross‐checked the developing analysis through confirmatory reading of the transcripts and discussion of the emerging thematic structure. Differences in interpretation were discussed between the researchers to refine the final themes and enhance analytical trustworthiness. NVivo qualitative data analysis software (version 14, QSR International, 2023) was used to organise and manage the qualitative data during the analytical process. Quotations presented in the manuscript were translated from Italian into English by a native English speaker and professional translator.

2.5. Ethical Considerations

Ethical approval for this qualitative study was obtained from the local ethics committee (Comitato Etico Milano Area 2) on 23 January 2023 (protocol number 319_2023). All study procedures adhered strictly to ethical standards outlined in the Declaration of Helsinki. Informed consent was explicitly obtained from all participants before commencing interviews. Participants were also informed about their right to withdraw from the study without consequence, and they were assured of confidentiality and anonymity in data handling and reporting.

3. Findings

During February 2023, a total of 21 mothers provided informed consent to participate in the interviews. Of the initial cohort of 75 pregnant women carrying a fetus diagnosed with CDH, 18 pregnancies were not carried to term, while in 20 cases the newborn unfortunately died shortly after birth. Additionally, 16 cases did not fully meet the predefined inclusion criteria and thus were excluded from the final sample. The 21 participating mothers had a mean age of 37 years (SD 5.0), and 12 (57.1%) lived outside the Lombardy region. Most participants were employed (15/21, 71.4%), and 14 (66.7%) had a vaginal birth. Further sociodemographic and clinical characteristics are reported in Table 2. Thematic analysis of the qualitative data identified five primary themes, summarised in Figure 1, which were further organised into 12 subthemes and 21 descriptive labels, as detailed in Table 3. Although the five themes are presented according to the main stages of the care pathway, participants' accounts also revealed cross‐cutting experiences of uncertainty, repeated adaptation, continuity needs, and changes in the maternal role across these stages.

TABLE 2.

Socio‐demographic and clinical characteristics of the sample.

ID	Age (years)	Marital status	Citizenship	Residence	Educational level	Occupation	Type of birth	Newborn gender
M1	48	Other	Italian	Toscana	High school degree	Employed	Caesarean section	Male
M2	37	Married	Italian	Sicilia	Post‐graduate degree	Employed	Caesarean section	Male
M3	34	Married	Extra UE	Veneto	Middle school degree	Housewife	Vaginal birth	Female
M4	34	Married	Italian	Campania	High school degree	Housewife	Vaginal birth	Male
M5	36	Married	Italian	Calabria	Post‐graduate degree	Employed	Vaginal birth	Male
M6	37	Married	Italian	Lombardia	Post‐graduate degree	Housewife	Vaginal birth	Male
M7	43	Married	Italian	Lombardia	Doctor of philosophy	Employed	Caesarean section	Male
M8	40	Married	Italian	Sardegna	Post‐graduate degree	Employed	Caesarean section	Male
M9	30	Married	Italian	Calabria	Post‐graduate degree	Housewife	Vaginal birth	Male
M10	36	Married	Italian	Lombardia	Post‐graduate degree	Employed	Caesarean section	Female
M11	41	Married	Italian	Lombardia	Post‐graduate degree	Employed	Vaginal birth	Male
M12	29	Married	Extra UE	Emilia Romagna	Middle school degree	Housewife	Vaginal birth	Male
M13	35	Married	Italian	Lombardia	Post‐graduate degree	Housewife	Vaginal birth	Male
M14	37	Married	Italian	Marche	High school degree	Employed	Vaginal birth	Male
M15	31	Married	Italian	Trentino Alto Adige	Post‐graduate degree	Employed	Vaginal birth	Female
M16	32	Married	Italian	Toscana	High school degree	Employed	Vaginal birth	Female
M17	41	Married	Italian	Lombardia	Post‐graduate degree	Employed	Caesarean section	Female
M18	39	Married	Italian	Lombardia	Post‐graduate degree	Employed	Vaginal birth	Female
M19	39	Married	Italian	Emilia Romagna	High school degree	Employed	Caesarean section	Male
M20	46	Married	Italian	Lombardia	Post‐graduate degree	Employed	Vaginal birth	Male
M21	41	Other	Italian	Lombardia	Post‐graduate degree	Employed	Vaginal birth	Female

FIGURE 1.

Main themes representing mothers' experiences across the congenital diaphragmatic hernia care continuum, from prenatal diagnosis and decision‐making to childbirth, postnatal care, and the transition home.

TABLE 3.

Themes and sub‐themes defined after the interviews with labels.

Themes	Sub‐themes	Labels
1. Diagnosis	1. Facing an unfamiliar diagnosis	1. Sources of knowledge about pathology 2. Approach to unknown pathology
	2. Pregnancy becomes a high‐risk care pathway	3. Multidisciplinary care of pregnancy 4. Sharing as a couple
2. Decision making and alternative options	3. Decision on future	5. Decision about continuation of pregnancy 6. The uncertainty of the future 7. Trusting in spirituality
	4. Uncertainty about the fetus's future	8. Reaching pregnancy term 9. Ongoing surveillance and consideration of FETO
	5. Prolonging pregnancy as a priority	10. Mode of birth and perceived implications for survival
3. Exhaustion throughout the care pathway	6. The diaphragmatic hernia is continuously monitored	11. Attendance at tight controls is essential
	7. The burden of travelling for specialised care	12. Living far from the referral centre 13. Responsibilities towards other children
4. Childbirth is given attention	8. Healthcare professionals	14. Patient‐centred care
	9. The birth experience	15. Birth 16. Separation from the baby
	10. Care setting	17. High‐intensity care setting 18. Look but don't touch
5. Postnatal period	11. The development of a support network	19. The relationship with other mothers in and out of the hospital
	12. Back home	20. Bringing the child home 21. A child to be monitored

3.1. Theme 1—Diagnosis

3.1.1. Facing an Unfamiliar Diagnosis

The clinical care pathway begins at the moment of diagnosis, during which mothers are confronted with an unfamiliar and rare condition. This initial disclosure marks a shift in pregnancy management, prompting a series of specialised evaluations focused on fetal anomaly. Given the rarity of CDH and the general lack of prior knowledge among expectant mothers, many turn to online platforms to seek information. These resources serve as tools to navigate and interpret the complex and often overwhelming information they receive at the time of diagnosis (Box 1).

BOX 1.

<I also went online a bit to understand what it was> (M5).

<I came to the appointment already overwhelmed with information I had read on the Internet> (M14).

<In the days before, I had come across a lot of very confusing information. Clearly, most people don't have the right tools to understand it — maybe because I'm a doctor, I could grasp exactly what the problem was and what it would entail. So I read a bit online > (M17).

The women included in the study were geographically dispersed across the country. Following the diagnosis of CDH, they were referred to specialised centres, such as the one where this study was conducted. Within these centres, the communication of the diagnosis was often described as profoundly distressing. Mothers reported feeling overwhelmed by the information provided, leading to a psychological state likened to being ‘in a bubble’, unable to fully process the situation. Many women characterised this moment as the most traumatic experience of their lives (Box 2).

BOX 2.

<We sat down and the doctor told us about congenital diaphragmatic hernia, which is a very rare condition, and of course I burst into tears because I didn't know what it was or what the baby might be facing> (M3).

<Since I didn't know what it was, I immediately asked if it was serious for the baby> (M7).

< …when I received the diagnosis, it was actually the worst period of my life; it felt like an ice‐cold shower hitting me, and I didn't know what to expect or what was coming. So it was really terrible, to be honest. I went through it very badly > (M18).

3.1.2. Pregnancy Becomes a High‐Risk Care Pathway

Following the uncertainty surrounding the initial diagnosis, referral to the specialised fetal medicine centre provided mothers with a more comprehensive and structured understanding of the condition. Detailed explanations and visual aids helped clarify the diagnosis and its implications for pregnancy and subsequent care, despite the emotional intensity of this period (Box 3).

BOX 3.

<They referred us to a team of specialists, and that was clearly a week filled with intense emotions> (M6).

<I went for a consultation with the doctor and her team, and that's when they gave me a much more comprehensive diagnosis. They explained everything to me; they even showed me—actually, they physically drew what they had found > (M17).

Partners play an essential role in understanding the medical pathway and in shared decision‐making, especially given the implications for everyday life and family dynamics (Box 4).

BOX 4.

<I could feel my baby moving a lot in my belly, and I kept telling my husband, ‘We'll make it.’ > (M4).

<From that moment until the end, we had so many thoughts, especially because neither my husband nor I knew what to expect> (M13).

<My husband was far away, and since the gynaecologist appointment is usually quick, but that time it lasted an hour and a half, my phone started ringing. Then I came out and called my husband, and even he didn't know what to say—he was stammering, because neither of us had really understood what it was all about > (M14).

3.2. Theme 2—Decision Making and Alternative Options

3.2.1. Decision on Future

Participants described being presented with different options regarding the continuation of the pregnancy. The decision to proceed emerged as a deliberate choice, made individually or together with the partner after considering the possibility of pregnancy termination (Box 5).

BOX 5.

<There were several options, and together with my husband, we decided to continue the pregnancy> (M2).

<They told us about the possibility of terminating the pregnancy, but I thought about it and said that I wouldn't do it > (M3).

Objective tools such as survival rate estimates were used to support informed decision‐making. Participants reported that counselling was enhanced by the empathetic attitude of healthcare professionals, which fostered trust and emotional reassurance. In some cases, spirituality was cited as a source of comfort and resilience (Box 6).

BOX 6.

<I felt welcomed, even with my huge problem—our problem. But I also felt a great sense of trust in all of them, in all of you, for what we were about to face—without any illusions, because there was still a 50/50 chance. Yet, despite that, there was an overwhelming sense of humanity that gave me hope, a desire to make it through—and little by little, we did> (M6).

<They told me it was a moderate hernia and, at the first consultation, they gave me around a 50%–60% chance of the baby surviving. But they also told me that the condition could worsen> (M7).

<I placed myself in the hands of the Lord, truly. I'm a very devout person, and I entrusted myself to Him > (M4).

3.2.2. Uncertainty About the Fetus's Future

The future of the fetus becomes a central focus. Reaching full term emerged as a critical goal for mothers, requiring both emotional fortitude and physical resilience. Many mothers emphasised the importance of remaining calm and being surrounded by positive influences to navigate the protracted period of uncertainty (Box 7).

BOX 7.

<I was tense also because they told me to try to carry the pregnancy to term, since if the baby is born early, obviously the fetus's chances of survival decrease> (M7).

<I tried to surround myself with positive people and avoid talking about it — I'm not sure if that was the right way to react, but in the end, it helped me reach the thirty‐eighth week more or less calm > (M17).

During follow‐up, mothers described the possibility of FETO as a recurring focus of clinical consultations, accompanied by frequent specialist assessments aimed at monitoring the evolution of the fetal condition. This repeated surveillance contributed to making fetal therapy an ongoing component of the pregnancy experience, even when the procedure was not immediately undertaken (Box 8).

BOX 8.

<The FETO procedure was always the topic of conversation, so those 4 days were really intense> (M8).

<I basically went back there every 10 days or so, to have these special ultrasounds to make sure the organs hadn't moved back up > (M17).

3.2.3. Prolonging Pregnancy as a Priority

Mothers became increasingly aware that prolonging gestation was essential for fetal survival. Many were advised towards vaginal delivery; however, when vaginal birth was not feasible, this often resulted in profound disappointment (Box 9).

BOX 9.

<I was hoping for a natural birth, but given the whole situation with the prematurity and the diaphragmatic issue, the obstetricians preferred to proceed with a caesarean section — and that was devastating > (M2).

3.3. Theme 3—Exhaustion Throughout the Care Pathway

3.3.1. The Diaphragmatic Hernia Is Continuously Monitored

Mothers described the referral center as a safe and highly specialised environment, where specialised gynaecologists, midwives, and nurses provided structured follow‐up visits and ongoing updates on fetal status (Box 10).

BOX 10.

<I had an ultrasound every 10 days to monitor how the fetus was developing and growing, to see if it was gaining weight and how the little lungs were developing> (M3).

<We had check‐ups in Milan every 2 weeks, and then, 1 month before the delivery, I moved permanently to Milan > (M8).

3.3.2. The Burden of Travelling for Specialised Care

Long‐distance travel to access care imposed significant logistical and emotional burdens on the women and their families (Box 11).

BOX 11.

<I chose Milan because my sister lives there, so I also had some support. Within a week, I was put in touch with the doctor from the prenatal diagnosis unit. I came to hospital once a week to see how things were developing > (M4).

Mothers from other regions of Italy reported experiencing both physical and emotional separation from their families. For those with other children, prolonged absences from home were often accompanied by feelings of guilt and distress about being unable to care for them (Box 12).

BOX 12.

<I felt really sorry for my [older son] because so much was taken away from him> (M1).

<I had to travel to Milan every 2 weeks, but otherwise I kept working and taking care of my other three‐year‐old daughter> (M8).

<I packed my suitcase again, had very little time to say goodbye to my child, and went back to Milan > (M13).

3.4. Theme 4—Childbirth Is Given Attention

3.4.1. Healthcare Professionals

At the time of delivery, some healthcare professionals were perceived as emotionally affected, with facial expressions that reflected fear or worry. In contrast, the midwife consistently emerged as a central figure capable of creating an emotionally safe and compassionate environment (Box 13).

BOX 13.

<I could see the sad faces of the neonatologists, of the nurses who didn't know how the surgery would go; so, this feeling was very strong> (M8).

<My experience of childbirth was wonderful. The midwife was incredibly kind—perhaps because she knew I was giving birth to a baby with health problems. I felt a great deal of gentleness around me > (M14).

3.4.2. The Birth Experience

Within the highly medicalised delivery‐room environment, midwives emerged as particularly trusted relational figures, while the presence of multiple healthcare professionals was generally perceived positively as evidence of preparedness to provide immediate neonatal care (Box 14).

BOX 14.

<We had the midwives, the doctors—I don't remember exactly how many, maybe five or six—inside the room waiting for my baby to be born> (M3).

<The midwife, whose name I don't remember, was amazing. I had a beautiful birth and I would have ten more just for the delivery itself > (M17).

3.4.3. Care Setting

The need for immediate neonatal care often meant mothers could not touch or hold their newborns at birth, which was experienced as a significant emotional sacrifice (Box 15).

BOX 15.

<I wanted to hold her in my arms, but I knew I couldn't do it — for her own good, to save her life > (M4).

3.5. Theme 5—Postnatal Period

3.5.1. The Development of a Support Network

Mothers recognised the uniqueness of their experience and valued the support of peer networks during hospitalisation, including interaction with other women and participation in associations for families of children with CDH (Box 16).

BOX 16.

<I connected with other mothers when I went to the breastfeeding room, when I went to visit my baby, and I met other mums who also had two children who had undergone surgery for severe left‐sided congenital diaphragmatic hernia. One of them had the FETO procedure> (M1).

<As I was going back home, I liked a Facebook page—an association for families who had dealt with people affected by diaphragmatic hernia. I immediately received a message from a woman in the group, who sent me a photo of her 18 year‐old son who had been born with a diaphragmatic hernia > (M14).

3.5.2. Back Home

Discharge from hospital marked a new, complex phase requiring the continuation of medical care at home. Mothers expressed both relief and anxiety in managing therapies and monitoring their child's condition outside the hospital setting (Box 17).

BOX 17.

<What matters most is that life is brought home! Everything else—well, of course…how can I say this… something stays with you, but what's truly important is having managed to defeat death, and that's no small thing> (M1).

<After 75 days, coming home filled us with an indescribable emotion! We were finally going back home, and it felt like coming back to life > (M3).

Despite the joy of bringing a living child home, mothers described this phase as even more challenging, requiring them to adapt quickly to a new caregiving role characterised by vigilance and emotional strain (Box 18).

BOX 18.

<At home, I was very anxious about her — I was constantly checking whether she was breathing properly, if she was eating enough, and so on> (M14).

<My daughter had to get a lot more vaccinations than other children. We had to go to many medical appointments. She still had quite a few issues with reflux, so we had to see the speech therapist and the physiotherapist, because she had spent such a long time in the hospital… It was demanding > (M17).

4. Discussion

This qualitative study explored maternal experiences across the care continuum following a prenatal diagnosis of CDH. The findings indicate that the diagnosis profoundly reshaped the experience of pregnancy, exposing mothers to emotional distress, prognostic uncertainty, complex decisions, and a highly specialised care pathway. These demands persisted beyond childbirth, with some mothers describing anxiety and heightened vigilance after hospital discharge. Overall, mothers experienced the CDH pathway not as a sequence of separate clinical events, but as interconnected transitions requiring repeated adaptation of their expectations, decisions, and maternal role. Thus, while the findings are organised chronologically to reflect the care pathway, the underlying experiences were not confined to individual stages but recurred and evolved across successive transitions.

The transition from the initial diagnosis to assessment at a specialised fetal surgery centre was particularly important. Previous studies have shown that delays in referral and inconsistent or incomplete information may intensify parental uncertainty and distress (Crombag et al. 2022; Russo et al. 2022). In our study, multidisciplinary consultations provided mothers with a more structured understanding of the fetal condition, available interventions, and possible outcomes. However, specialist counselling did not eliminate uncertainty, as prognostic estimates remained probabilistic and could change throughout pregnancy. This suggests that counselling should be considered an ongoing process rather than a single information‐delivery event. Information may need to be repeated, clarified, and adapted as the clinical situation and parents' capacity to process it evolve. This extends previous prenatal‐focused findings by suggesting that the need for clarification and support is not confined to initial counselling but may recur in different forms as mothers move through subsequent clinical transitions. Although participants generally described specialist prenatal counselling in multidisciplinary rather than profession‐specific terms, the informational and emotional needs identified in their accounts have clear implications for nursing and midwifery practice. Nurses and midwives, as professionals who may interact repeatedly with women across different stages of the pathway, are well positioned to reinforce complex information, assess understanding, identify unresolved concerns, and support continuity between specialist consultations (Wilpers et al. 2024).

Decision‐making emerged as a relational and context‐dependent process rather than a discrete choice based solely on prognostic estimates. Mothers interpreted clinical information in relation to their responsibilities towards the fetus, their partner and other children, as well as the practical demands of travelling or relocating to access specialist care. This interpretation is consistent with qualitative evidence showing that decisions following a diagnosis of severe fetal anomaly are shaped by the social context and the parent–clinician relationship and cannot be fully captured by idealised models of autonomous choice (Paton et al. 2020). Clinicians have similarly emphasised the need for repeated counselling tailored to parental needs and addressing prognosis, treatment options, long‐term consequences, and practical implications while preserving parental agency (De Groot et al. 2023). Evidence from fetal surgery in other conditions further suggests that time pressure, trust in the specialist team, parental agency, and contact with other families may influence how decisions are reached (Hansen et al. 2023). Our findings add that family and logistical consequences were not merely subsequent burdens of treatment but formed part of the decision itself. Counselling regarding FETO should therefore combine balanced communication of benefits, risks, and uncertainty with explicit exploration of family values, caregiving responsibilities, access constraints, and support needs, allowing decisions to be revisited as the clinical situation evolves.

Centralisation of CDH care provides access to fetal medicine, neonatology, paediatric surgery, and coordinated perinatal planning (Kirby and Keijzer 2020; Mesas Burgos et al. 2025). Nevertheless, our findings also highlight the burden associated with travelling or temporarily relocating to a specialist centre. Mothers described separation from partners, children, and established support networks, as well as disruptions to work and family life. This reveals a tension between the clinical benefits of concentrating expertise and the practical, social, and financial costs borne by families. Similar burdens have been reported among families referred to tertiary fetal care centres, including long‐distance travel, temporary relocation, accommodation and childcare costs, work absences, and adverse effects on other children (Gregory et al. 2024). Family‐centred pathways should therefore consider not only specialist treatment, but also accommodation, travel and sibling‐care support, collaboration with local services, and continuity when families return to their home region.

Childbirth represented a further disruption of the expected maternal experience, as the need for immediate neonatal stabilisation often prevented early physical contact and challenged mothers' anticipated transition to parenthood. Similar difficulties in assuming the parental role have been described when infants with CDH or other critical conditions are separated from their families after birth (Dimmer et al. 2026; van den Hoogen et al. 2021). Importantly, childbirth was also the stage of the care pathway in which a distinct profession‐specific contribution emerged most clearly from participants' accounts. Midwives were repeatedly described as trusted relational figures who provided reassurance, compassion, and emotional safety within an otherwise highly medicalised environment. This finding suggests that midwifery care may have relevance in preserving the woman's sense of agency and supporting her transition to the maternal role when clinical attention necessarily shifts rapidly towards neonatal stabilisation (Kuipers et al. 2024). Antenatal preparation for the delivery‐room environment, clear and compassionate communication, and opportunities for maternal involvement whenever clinically feasible may therefore help mitigate, although not eliminate, the disruption associated with neonatal separation (Labrie et al. 2021). In contrast, during prenatal counselling, fetal monitoring, neonatal care, and the transition home, mothers more often described support in multidisciplinary rather than profession‐specific terms. Nursing and midwifery implications at these stages should therefore be interpreted primarily in relation to the maternal needs identified across the care pathway rather than as direct evidence of profession‐specific interventions.

Discharge did not mark the end of the care pathway but transferred substantial responsibility from healthcare professionals to the family. Mothers described relief at returning home alongside anxiety related to monitoring breathing, feeding, therapies, and possible deterioration. Previous research has documented the complex follow‐up needs of CDH survivors and the effects of caregiving on parental quality of life, employment, and family functioning (Al Baroudi et al. 2021; Cimbak and Buchmiller 2024; Tragesser et al. 2021). Our findings add that the vigilance developed during hospitalisation may persist at home and become a source of anxiety. Nurses may play a key role in this transition by assessing parental readiness, reinforcing caregiving skills, identifying emotional and practical support needs, and coordinating communication between specialist and local services. Evidence from neonatal transitional care supports the value of structured nursing support extending beyond discharge in improving parental preparedness and confidence (Griffith et al. 2022; Tiryaki et al. 2024). Discharge preparation should therefore extend beyond technical education to include clear guidance on warning signs, accessible contact with the specialist team, coordinated follow‐up, and assessment of parental wellbeing (Kim and Kim 2024).

Rather than identifying an entirely new set of maternal needs, the contribution of this study lies in integrating experiences previously described as specific needs, outcomes, or stage‐related concerns and showing how uncertainty, adaptation, and changes in the maternal role persist and are reconfigured across interconnected transitions from prenatal diagnosis to home (Crombag et al. 2022; Dimmer et al. 2026; Petit‐Steeghs et al. 2019; Taillieu et al. 2023). This continuum‐based perspective identifies key transitions at which continuity of nursing and midwifery care may reduce fragmentation, reinforce understanding, support maternal wellbeing, and facilitate the transition to the parental role. Evidence suggests that midwifery continuity may benefit maternal mental health, while structured transitional care combining parental empowerment, emotional support, and professional coordination may improve preparedness for home care (Cibralic et al. 2023). Future multicentre longitudinal studies should include partners, bereaved parents, and families following different clinical pathways, and evaluate the effectiveness of designated professional contacts, psychological assessment, structured follow‐up, and peer support.

4.1. Implications for Nursing and Midwifery Practice

The findings identify several transitions at which nursing and midwifery support may be particularly relevant. Practice priorities include reinforcing complex information after specialist consultations, assessing maternal understanding and emotional needs, preparing women for childbirth and possible neonatal separation, facilitating parental involvement in neonatal care, and supporting readiness for discharge and home caregiving. Continuity between fetal medicine, maternity, neonatal, and community services may also help reduce fragmentation across the pathway. These implications are derived from the maternal needs identified in this study and should not be interpreted as interventions whose effectiveness was directly evaluated. Future research should examine the feasibility and effectiveness of nursing and midwifery models designed to support continuity across the CDH care pathway.

4.2. Limitations

This study has several limitations that should be acknowledged. First, the sample was drawn from a single referral centre in Northern Italy, which may limit the transferability of the findings to cultural or healthcare settings with different organisational structures, levels of service provision, or family support systems. Second, the exclusion of mothers receiving ongoing psychological support may also have systematically underrepresented women experiencing greater psychological vulnerability, whose perceptions and support needs may differ from those represented in this study. Accordingly, the findings should not be extrapolated to women experiencing pregnancy termination or fetal/neonatal bereavement, whose experiences and support needs may differ substantially. Third, interviews were conducted retrospectively, at variable intervals after birth, ranging from several months to several years, which may have introduced recall bias or affected the emotional salience of participants' accounts. Most interviews were conducted by videoconference, facilitating the participation of geographically dispersed mothers and preserving some visual interaction. However, the telephone interviews did not allow the observation of facial expressions or body language and may have limited rapport and the interpretation of non‐verbal cues. In addition, the average interview duration of approximately 20 min was relatively short for an in‐depth qualitative study. Although the focused interview guide enabled participants to address the principal stages of the care pathway, the limited duration may have reduced opportunities for further probing and constrained the exploration of more nuanced, contradictory, or emotionally sensitive experiences. Consequently, the findings may primarily reflect the most prominent shared dimensions of maternal experience rather than provide exhaustive accounts of individual experiences. The study also did not include the perspectives of fathers, partners, or other family members involved in the care journey, which could have provided a broader understanding of family experiences. Finally, although recurrent patterns were identified across the 21 interviews, a formal prospective saturation assessment was not documented. Together with the relatively short interview duration, this limits our ability to demonstrate that the full range of potentially relevant experiences was captured.

5. Conclusion

This qualitative study shows that maternal uncertainty and adaptation extend across the CDH care continuum, from prenatal diagnosis and specialist referral to decision‐making, childbirth, neonatal care, and the transition home. The findings identify potential priorities for nursing and midwifery practice at these transitions, including reinforcing understanding, supporting preference‐sensitive decision‐making, preparing women for childbirth and possible neonatal separation, facilitating parental involvement, and promoting readiness for home care. These priorities arise from maternal needs identified in the study rather than from evaluation of specific nursing or midwifery interventions. Future research should examine how these elements can be integrated into coordinated models of care across the CDH pathway.

Author Contributions

Morena Terracciano: conceptualization, investigation, data curation, formal analysis, writing – original draft, visualisation, software, project administration. Cristina Lumia: writing – original draft. Filippo Binda: writing – original draft, visualisation, investigation. Chiara Grossi: investigation, data curation, formal analysis. Barbara Sappa: conceptualization, investigation. Anastasia Giri: investigation, data curation. Nicola Persico: writing – review and editing, supervision. Antonella Nespoli: writing – review and editing, supervision, conceptualization, methodology.

Funding

This study was partially funded by the Italian Ministry of Health—Current research IRCCS.

Disclosure

The inclusion of more than 25 references was necessary to ensure scientific rigour and contextual depth. Congenital diaphragmatic hernia is a complex condition that spans multiple domains such as fetal medicine, surgery, neonatology, genetics, and maternal mental health. To adequately frame the study, it was essential to integrate evidence from epidemiological data, advances in surgical innovation (like FETO procedure), outcomes research, and qualitative literature on maternal experiences. Drawing on a wide range of references also allowed us to highlight both the clinical challenges and the psychosocial dimensions of care, ensuring a comprehensive background for interpreting our findings. In addition, referencing multiple sources strengthens the credibility of the discussion by demonstrating alignment with current international evidence and guidelines.

Ethics Statement

Ethical approval for the study was obtained from the local ethics committee (Comitato Etico Milano Area 2) on 23 January 2023 (protocol number 319_2023).

Consent

All participants provided written informed consent prior to their involvement in the study. They were clearly informed of the study's purpose, procedures, and their right to withdraw at any time without any consequences. Confidentiality and anonymity were strictly maintained throughout data collection, handling, and reporting. All study procedures were conducted in accordance with the ethical standards of the Declaration of Helsinki.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.