Voices of Parents of Children with Major Congenital Anomalies: 
Themes from Initial Diagnosis, NICU Hospitalization, and Discharge Home

doi:10.21203/rs.3.rs-4980057/v1

Objective: To describe the parent experience of having an infant with a congenital anomaly from prenatal diagnosis. NICU, and post-NICU care

Study design: Qualitative study

Results: We interviewed 18 parents (13 mothers, 5 fathers) whose children were in our NICU to explore challenges in care and identify strategies to improve care. During the prenatal period, key challenges were inadequate initial support, having to decide about medical procedures, impact on mental health, and loss of a “normal” baby. In the NICU, challenges were lack of interdisciplinary communication, isolation, and knowing how to parent. After discharge home, challenges were hypervigilance, burden of caregiving, adjusting to life at home, and financial impact.

Conclusion: Parents of infants with anomalies experience significant stress and isolation after initial diagnosis and NICU care. Key interventions helpful to families were empathetic and consistent healthcare teams; consistent communication,engagement in NICU care, and ongoing support after discharge home.

Health sciences/Health care/Health services

Health sciences/Health care/Patient education

congenital anomalies

parent experience

birth defect

NICU experience

Infants with congenital anomalies constitute a significant proportion of NICU admissions at children’s hospitals, and often have chronic, complex healthcare needs. (1–4) Parents of these children undergo a uniquely stressful experience, often beginning during pregnancy upon fetal diagnosis, and continuing through their child’s birth, NICU admission, and post-NICU life. (5, 6) Parents of children with anomalies, particularly those with more complex illness, often experience lower quality of life during and after NICU discharge.(3)

There is a large body of neonatal research about the parent experience of caring for a premature infant and strategies to improve the NICU experience and post-NICU transition for these families. (7–10). However, research about the experiences of parents of infants with congenital anomalies has been limited, and include studies about the psychological impact of prenatal diagnosis, (11–17) parental experiences after termination of pregnancy for lethal diagnoses, (18) and caring for infants with congenital anomalies into childhood (19, 20). A description of parents’ experiences across the trajectory from diagnosis to life after discharge home has not been adequately explored. This is of critical importance, as interventions to support parents may need to be tailored to their specific context. For example, bereavement support needs differ from the support needs of caregivers coping with a child with a chronic condition.

The objective of our study was to describe the experiences of parents of infants with congenital anomalies in the prenatal period, during the NICU stay, and following the transition to caring for their child at home. Our goal was to identify strategies identified by parents that could improve family-centered care at various stages of this experience.

Study Design

We conducted a qualitative, descriptive study to examine the experiences of parents of infants with a congenital anomaly. This study was reviewed by the Children’s Hospital of Wisconsin Institutional Review Board (IRB00002082) and deemed exempt.

Sampling Strategy

We enrolled parents of children with anomalies who received care in our NICU between March 2022–2023. We used purposive sampling to include children with a wide range of major congenital anomalies. Parents of multiples were included if at least one child had a diagnosis of an anomaly. We excluded parents of infants with isolated cardiac anomalies, infants discharging on home hospice, parents with known minimal NICU visitation, under the age of 18, and non-English speaking parents.

We used a dual, prospective and retrospective screening strategy for enrollment. Our level IV NICU maintains a database of all patients admitted to the NICU that captures diagnoses including anomalies. For retrospective enrollment, we contacted parents of eligible patients discharged from our NICU within six months of study onset. Our NICU has a nurse call-back program for all patients discharged from the NICU; the nurse asked for permission to be contacted by our research team. Parents who agreed were contacted for formal consent. For prospective enrollment, we screened weekly for infants admitted to our NICU with major anomalies. Eligible parents were contacted about the study during their NICU stay once discharge was anticipated. For parents in both enrollment groups, our research team contacted them via telephone within six months of NICU discharge to schedule a video interview. We attempted to reach parents a total of 3 times. If both parents agreed to be interviewed, we gave them a choice to interview separately or together. Informed consent was obtained from parents for the interview as well as a retrospective chart review to assess their child’s NICU course.

Data Collection

Interviews were conducted and recorded via HIPAA compliant Zoom®. Interviews were conducted by three trained research team members (J.L., A.G., T.AZ.) who were healthcare professionals. A semi-structured interview guide was created by the researchers with experience in qualitative methodology (N.M., S.L.) with feedback from a former NICU parent who serves on our NICU parent advisory committee. The interview included questions to explore what parents found challenging and helpful during their journey. Parents received a gift card following interview completion. Demographic, NICU illness severity and post-discharge data were collected by retrospective chart review.

Data Analysis

We used inductive qualitative content analysis to determine latent themes from parent interviews. We used Rev.com© to transcribe interviews verbatim. Research team members (J.L., A.G., T.AZ.) listened to the audio and compared them to the written transcripts for accuracy. Each transcript was reviewed and coded independently by two investigators (J.L., K.A.); K.A. used a software qualitative data management program (NVivo10) and J.L. coded data by hand. To ensure rigor, these investigators met regularly to discuss coding decisions, interpretation of the data, and emerging themes. Data collection was stopped after data saturation was reached. A qualitative methods expert (N.M.) independently reviewed the findings at multiple points throughout the analytic process. After all interviews were coded, investigators (J.L., K.A., N.M.) met to synthesize themes and subthemes.

After retrospective screening, we contacted 29 eligible parents who gave permission to be contacted;13 parents consented to the study, and 6 were interviewed. Through prospective screening, we identified 60 eligible patients; of these, 13 consented to the study and 12 were interviewed. In-depth, semi-structured interviews were conducted from March 2022 -2023 with 18 parents (13 mothers and 5 fathers). One interview included both parents. Interviews lasted 30 to 60 minutes.

Parent and infant demographics are shown in Table 1. Most parents were white, married, and living in middle-income neighborhoods. Most infants were born after 34 weeks; one was an extremely preterm infant with a congenital anomaly, and three infants had multiple anomalies. Most infants received surgery in the NICU and had a long length of stay. One-third of infants were discharged with technologic support.

Table 2 highlights three themes related to parental challenges, which are described in detail below.

Loss of a normal pregnancy

Inadequate support from healthcare team at initial diagnosis After being told about their child’s condition by their primary obstetrician, many were not told what this information meant for their child. Prior to being seen in a multidisciplinary fetal care center, parents dreceived inadequate information and support..Parents also described the stress of having to decide about medical options during pregnancy, often with time constraints to make these decisions, for example, decision to terminate the pregnancy, or deciding about fetal interventions. Impact on parent mental and emotional health was significant, especially in mothers. Many mothers experienced guilt that they had caused their infant’s condition. One mother stated, “I think I struggled a little bit with feeling, what did I do wrong to cause this? Because I had COVID in my first trimester and I'm like, did that cause this and stuff?” (Mother 4). Some parents experienced depressive symptoms once learning about their child’s diagnosis and feared losing their child, especially when they had experienced prior pregnancy loss. They braced themselves for more bad news at every appointment. Parent mental health was also impacted by prognostic uncertainty and a loss of control, and knowing they were not having a ‘normal’ baby as they compared their pregnancy with normative healthy baby expectations from their family and friends.

Parenting a baby in the NICU

Parents found it frustrating when there was inconsistent care and communication, especially as rotating providers sometimes changed the care plan established by the previous provider, or when there was lack of interdisciplinary communication between different specialties. Similarly, when there was inconsistent nursing care, parents felt they were responsible for relaying important information about their child to the nurses for fear that something vital would be missed. “It's frustrating because every two weeks we got set back a week because the new doctor would come in and wouldn't feel comfortable sending us home, or wouldn't feel comfortable moving forward with anything with her” (Father 2)

Parents often felt helplessness and isolation in the NICU. They were not able to provide comfort to their child, such as after surgery or when their child was in pain, not able to make their child’s diagnosis better, and had to routinely trust others with their child’s care. Some parents feared connecting with other families in the NICU. “But there were families who didn't get to take their kid home. And so part of me was like, that's not my story and I can't imagine that story. And so how dare me want to be friends with you and talk about my baby or my experience when you are dealing with something I cannot imagine? So to me that was like, I kind of felt okay with not having that immediate support.” (Mother 6)

Parents struggled with knowing how to be a NICU parent. Holding and bonding with their baby was challenging due to medical equipment and underlying diagnosis, for example, gastroschisis, or a baby who underwent abdominal surgery. Feeding in the NICU was a challenge and feeding setbacks were particularly difficult. Mothers described the complexity and challenges of breastfeeding and pumping and the worries about their baby not tolerating feeds.

Many parents had to balance parenting other children and work while also trying to not disrupt the family unit. Parents felt guilty that they were spending more time with one child over the other..

Adapting to life outside the NICU

Hypervigilance and worries referred to parents’ descriptions of constantly worrying about their child. Parents had short-term worries related to sleeping, feeding, and their child getting sick, but also long-term worries about how their child would grow, develop, and feel about their condition. As one father described, “I realize that his diagnosis at that point, and still today a little bit, is kind of a moving target. But just trying to get the perspective and then also understanding that time is what's needed too. And that, while that's hard, and I think that's something that we've really struggled with, is that we won't really know the extent of the damage or the kidney disease until some time has passed, and the surgery has had its chance to progress” (Father 4).

At home, parents felt the burden of caregiving and having less time for themselves and for their other children. Often, their child needed medical equipment assistance, rigorous feeding or therapy schedules, and multiple follow-up appointments. Some children had to be re-hospitalized which was particularly stressful. Some parents felt they were provided with unrealistic management plans that were impossible to accomplish. Others described how these burdens may affect their family long term. Even with a routine, parents felt overwhelmed. As stated by one mother “There's medications I have to give him. Then, there's physical therapy I should be doing with them. Then, there's trying to do oral foods I should be doing with them. Then, maybe I should be getting him on the same exact off feeds from 7:00 to 9:00 in the morning and at night or something like that. There's just so much to do to try and get in a good routine” (Mother 11). Adjusting to life at home was a challenge for most parents. They could no longer rely on 24/7 monitoring the NICU provided to ensure their child was safe at home. This was more difficult for first-time parents who were also learning basic newborn cares.

Numerous parents described the financial impacts related to their child’s healthcare, acknowledging that the cost of having a child admitted to a NICU was enormous. Some of the parents went from dual-income households to single-income households in order to provide care for their child. Parents also found it difficult to navigate the complexities of insurance coverage and reported spending a lot of time on the phone.

Fathers vs. mothers

During the prenatal period, fathers described feeling helpless when they could see their wife was so uncomfortable and wanted to do more to help. After birth, fathers felt they spent less time with their child in the NICU compared to mom and therefore felt less comfortable handling their baby. Fathers often struggled to get paternity leave, and were often the parent who was responsible for taking care of infant’s siblings. Once discharged home, fathers found it challenging to balance their work while also trying to support their family.

Parents described key strategies that improved their ability to be a parent and feel supported (Table 3) as below.

Creating comprehensive, consistent, and caring medical teams

Parents identified multiple examples of system and individual responses to demonstrate comprehensive and caring management. These included access to a comprehensive prenatal care team where families could meet with different specialists and have in-depth, honest conversations to better understand their child’s diagnosis. Having a primary contact within this center, such as their nurse coordinator, to help them navigate through their prenatal journey, was especially valued. In the NICU, parents described the power of having primary nurses who knew their child and provided consistent and supportive care. They appreciated that primary nurses would advocate for their child, get their questions answered, and were available, night or day to answer questions about their baby. Parents felt they could trust these primary nurses with the care of their baby. It was powerful when doctors and other providers went above and beyond medical care, such as when residents held their baby on nights, when providers asked about parental well-being, and thought of creative ways to solve problems.

Providing empathetic and accurate communication

Balancing hope with reality Parents appreciated when providers were honest in communicating both good and bad news while continuing to provide hope for their child. They found it helpful when providers acknowledged their emotions and helped assuage guilt. Receiving consistent messaging about their child’s condition was valued as was communication using drawings when applicable and describing all possible scenarios. Parents appreciated proper communication etiquette in which providers considered a parent’s emotional and physical state before delivering significant medical information about their child.

Engaging Families in NICU Care

Encouraging parental presence in the NICU Parents found early bedside involvement to be very beneficial. They appreciated the education they received from hands-on practice with nurses, which helped relieve their anxieties and better prepared them for discharge home. Some parents found it helpful to attend NICU rounds, as this gave them an opportunity to receive updates and advocate for their child. The NICU offered resources to support families. Examples of resources that parents found helpful were the Ronald McDonald house, parent/peer support groups, child life specialists, lactation, case managers, therapists, psychologists, and social workers. Parents desired better preparedness for NICU discharge, including when to expect discharge (which often changed), and practical guidance about what to expect at home as opposed to paper handouts with discharge instructions.

Supporting families after discharge home

Most parents described the joys of seeing their baby’s developmental progress at home, therefore setting the expectation that being home could be a developmental intervention. Making follow-up appointments easier for families who are navigating multiple appointments is important. Parents also felt the loss of a primary team coordinating their child’s care and having easy access to all subspecialists like they did in the NICU, and often felt their pediatrician was not able to address all issues. Providing connection to other families who had a child with a similar diagnosis was helpful for parents. Often, parents sought these connections on their own. These relationships gave parents a resource in which they could ask questions and learn more about their child’s diagnosis, while also giving them hope and emotional support. Some parents felt a lack of mental health support once leaving the NICU. All families in our NICU have access to a psychologist to learn how to ease parental stress. Once home, parents no longer had access to these services and felt they were on their own. Most parents relied on their personal support network, including family and friends, to help. Home nursing support was helpful to many families that qualified for this service. Parents appreciated having access to medical care once discharged and saw the benefits to their child’s development and care.

In this single-center study, we describe the experience of parents of children with congenital anomalies, from initial diagnosis, during the NICU hospitalization, and then following the discharge home. Our data provide insight into what resources and interventions may be helpful for families.

During the prenatal period, parents grieved the loss of a normal pregnancy in ways different from what has been reported for parents of premature infants. (11, 22–24) For parents of premature infants, the loss of pregnancy results from pregnancy interruption and being ‘thrown into’ parenthood coupled with significant maternal events and loss of control over these events. (24) For parents expecting a baby with an anomaly, there may be more time to prepare for parenthood, but this time is fraught with significant emotions from knowing and coping with the fetal diagnosis and a highly medicalized pregnancy where they may have to make decisions about medical interventions for themselves and/or their baby. A helpful prenatal intervention described by parents in this study was the referral to our multidisciplinary fetal concerns center, which has been a well-established model of perinatal care for pregnancies complicated by fetal anomalies. (25) Key components of this model include providing multidisciplinary communication, understanding the family’s goals and values, and providing treatment recommendations based on those goals. However, most families will learn about the fetal diagnosis at their primary OB office where access to a multidisciplinary team specializing in these cases may not be available at first. Providers at these centers should take into consideration the enormous initial impact of a fetal diagnosis on families and focus on providing psychological support in addition to medical information while establishing referral to a multidisciplinary center. Providers at fetal centers should take into consideration that making time-sensitive decisions can be intensely stressful for families and help them understand and process information that can help them make these decisions. Once baby is born and in the NICU, NICU providers need to recognize the journey these parents have been through. Reviewing all relevant prenatal data about diagnosis, family support, and prenatal conversations about extent of intensive care in accordance with family’s goals provides a starting ground for conversations with families and establishes continuity of care.

While in the NICU, parents often struggled to navigate parenthood in ways similar to those described for parents of premature infants such as how to hold, bond, feed, and be present for their child. (26) What may be different for parents of children with anomalies is a heightened sense of isolation, as many of these individual diagnoses are rare, and parents have more worry about their child’s comfort as many of these children require surgical intervention. (28) Early and ongoing inclusion of parents in their child’s NICU care is critical to support parents psychologically and to prepare them for transitions in care (25–28). To better support parents of infants with anomalies in the NICU, it may be especially important to validate their experience of parenthood, include their opinions in clinical decision-making, and empower them to perform routine parenting tasks in the NICU environment despite differences in equipment or anatomy that may require modifications to those activities.

Parents desired effective interdisciplinary communication and valued empathy, humility, and personal connections with their medical team. While these qualities should be applied to all NICU families, specifically for parents of infants with a congenital anomaly, good interdisciplinary communication is key. Interdisciplinary communication should occur at regular intervals and should include not only discussions about medical plans but also how teams will communicate these plans with families. Healthcare teams must discuss what will be communicated to families and consider the parents’ readiness to receive this communication. Routine and required education for the NICU team and subspecialist providers about best practices for communicating with families could improve their communication skills and ultimately help families feel heard and acknowledged as partners in care.

After discharge, many parents describe the excitement of being home with their child and the joy they experienced with their child’s developmental gains. However, some felt that things were not necessarily easier when home. We previously reported that parents of children with congenital anomalies have a lower quality of life after discharge than parents of preterm infants. (3) This study provides insight into why this occurs based on parents’ descriptions of viewing their child as fragile, the stress of follow-up appointments and therapies, and a lack of resources. To help with this transition, families need a collaborative multidisciplinary support system once discharged home. (28, 29) Areas of need that emerged from parents were an improvement in appointment scheduling and number of follow-up appointments, more expansive parent peer resources, continued access to parent mental health support, and greater availability of home nursing support.

While many changes can be made within the healthcare system to improve care for families of children with congenital anomalies, some changes need to be implemented at the societal level.These strategies include greater awareness and support for complicated pregnancies especially mental health support, affordable healthcare, paid family leave, expanded childcare options, easier access to supplies/equipment for children with special needs and increased availability of respite care. Previous studies have acknowledged the impact societal demographics have on families care in the NICU, especially how challenges are exacerbated for families of color and low socioeconomic status. (27–31) There is a need to improve collaboration between the healthcare system and community agencies to ensure that parents have seamless transitions and support as they navigate caring for their child at home.

Study Limitations

Our study has several limitations. As a small, single-center study conducted during the COVID-19 pandemic, our ability to recruit a diverse sample of parents from a variety of racial, cultural, and socioeconomic backgrounds was limited. Parents in this study had access to care at a multidisciplinary fetal concerns center. Those cared for within healthcare organizations without this resource may require support that may differ from that described by those we interviewed. Parents who participated in our study were highly involved in their child’s care and were frequently present in the NICU. Therefore, parents who may have barriers to their involvement in care should be targeted in future studies. Understanding difficulties that impede one’s ability to be part of NICU care is a critical area of inquiry that has not been well explored in the literature. Despite these limitations, this study highlights a more comprehensive examination of parent’s experiences from pregnancy to care at home.

Parents of infants with anomalies experience a complicated prenatal journey that has a significant impact on their mental health and their identity as parents. Parents’ sense of isolation, worries about keeping their baby comfortable, and need for greater support after discharge home are key areas in which interventional strategies are needed. A consistent, caring medical team starting in the prenatal period, recognition of these parents’ unique NICU needs, a focus on advocacy and consistent cross-disciplinary communication, early and ongoing family engagement in the NICU, and improving systems of support following discharge are key ways to improve the experience of these families. Future research should aim to develop and test supportive interventions in partnership with NICU families who are experts in the needs of this population.

Funding:

This study was internally supported by funds from the Department of Pediatrics, Children’s Wisconsin

Author Contributions:

All authors contributed to the study design, investigation, and preparation of the manuscript

Conflicts of Interest and Financial Support: The authors have no conflicts of interest or financial disclosures.

Data sharing statement

Data from the study are not available for sharing

Acknowledgements

The research team is grateful to Monica McLeod, former NICU parent, who reviewed the study design and interview guide and provided critical feedback. We are grateful to all the parents who participated in the research study and thank them for their contributions.

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Table 1. Parent and infant demographic and clinical characteristics (n=18 parents and 13 infants)

Parent Demographics (n=18)

N (%)*

Age range, years

18-24

25-34

35-44

Unknown

2 (11)

11 (61)

3 (17)

2 (11)

Gender

Female

Male

13 (72)

5 (28)

Race

Caucasian White

Asian

Hispanic

16 (89)

1 (5.5)

Employment

Employed

Unemployed

12 (67)

6 (33)

Marital Status

Married

Partnership, not married

Single

16 (89)

1 (5.5)

Has other children

11 (61)

Religion

Christian

Jehovah’s Witness

Does not identify with a religion

10 (55.5)

1 (5.5)

7 (39)

Median household income based on zip code data (based on 2021 USD):

<$50,000

$50,000-$75,000

$75,000-$100,000

>$100,000

1 (5.5)

10 (55.5)

4 (22)

3 (17)

Time of interview from NICU discharge, median (IQR), months

3 (2-5) months

Infant characteristics (n=13)

n=13 (%)

Gestational age

22w0d-27w6d

28w0d-33w6d

34w0d-36w6d

>37w0d

1 (8)

5 (38)

6 (46)

Age of child at interview, median (IQR), months

4.5 (3-7.75) months

Gender

Female

Male

5 (38)

8 (62)

Twin birth

2 (15)

Infant Anomalies

Congenital diaphragmatic hernia

Gastroschisis

Tracheoesophageal fistula/Esophageal atresia

Amniotic band syndrome

Facial femoral syndrome

Hydronephrosis

Intestinal atresia

Myelomeningocele

Omphalocele

3

2

1

Multiple anomalies

3 (23)

LOS in the NICU, median (IQR), days

46 (31-69) days

Received mechanical ventilation

Duration of mechanical ventilation, median (IQR), days

11 (85)

8 (2-14) days

ECMO

1 (7.7)

Had surgeries while in the NICU

Number of OR trips, median (IQR)

12 (92)

2 (1-4)

Needed discharge supports

Home Oxygen

G-tube

VP Shunt

4 (30)

2 (15)

1 (7.7)

*Continuous variables are presented as medians with interquartile ranges

IQR=interquartile range; LOS= length of stay; ECMO= extracorporeal membrane oxygenation; G-tube= gastrostomy tube; VP shunt= ventriculoperitoneal shunt

TABLE 2: Parents’ Experiences of their Child’s Anomaly from Initial Diagnosis, Birth Hospitalization and Discharge Home: Themes, Subthemes and Exemplar Quotes

Themes	Subthemes	Quotes
Loss of a normal pregnancy	Inadequate support from the healthcare team at initial diagnosis	“Here's what's wrong with your baby. Any questions?" And I was like, "Well, what are questions I should ask? Because I don't know anything.” (Father 3)
	Having to decide about medical procedures	“So from her diagnosis and to the date of the surgery, we had in total six weeks to make a decision on whether or not we to go through with the (fetal) surgery” (Mother 10)
	Impact on mental health	“I ended up staying in bed for about a month and a half because I was just so depressed because I'm like, well, I'm going to lose her anyways and if I get attached it's literally going to break me. I couldn't go through another loss.” (Mother 2)
	Not a “normal” baby	“So she brought a gift for the baby, and all the clothes were zero to three months. I see the clothes and I just cried for half hour. I couldn't... She's like, "What did I do wrong?" I had to explain the baby could not wear them because the baby will be born with a special needs. He cannot wear any clothes. He probably has to stay naked for three months.” (Mother 7)
Parenting a baby in the NICU	Inconsistent care and communication/Lack of interdisciplinary communication	“And the communication between the Children's surgery team and I don't even know who it was who came back to my labor and delivery room, they were completely different stories. They would do their stuff. They wouldn't even talk to anybody. They would come, and do their stuff, and they would leave, and then, the nurse would come and be like, "So what'd they say?" And it's like, "Well, they didn't really say anything to me, either." So then, they're like, "Well, let me find out." So then, she was texting, and then we'd have to wait to find out information. So communication, amongst the different teams, I think, would be greatly beneficial.” (Father 5)
	Isolation and Helplessness	“Most challenging on all these times was not knowing what pain he was in, especially after the surgery. What was the level of pain, how he handled that, how we were holding him.” (Mother 7)
	Knowing how to be a NICU parent	“This is going to be a funny way to put it, but NICU etiquette. We weren't sure what we could and couldn't do, what we could and couldn't ask. So it took weeks for us to hold her at first because we weren't even sure that that was something we could do or ask” (Mother 10)
	Feeding in the NICU	I couldn't comprehend how he was going to be okay if he couldn't eat anything. I don't know, so I feel like that would've been ... I feel like just that needed to be explained to me that he was getting stuff through the IV so he was going to be fine. Because the first thing they teach you is they'll want to nurse right away.” (Mother 8)
	Balancing life outside the NICU	“Because she had all the care that she could need in that moment (in the NICU). And our son (at home) had experienced weeks upon weeks without both of his parents, and that's something that has never happened for him. And so, it just felt like he needed us and she almost needed that space to grow. and I know it's what I needed.” (Mother 10)
Adapting to life outside the NICU	Hypervigilance and worries	“But that fear of is he going to develop? Is he going to develop on time? Is he going to continue to eat? Is he going to continue to gain weight? There's just so many unknowns.” (Mother 13)
	Burden of caregiving	“In a perfect world, yes, she would wear her brace 23 hours a day and she would wear the band 23 hours a day, and there's just no way to physically get to that. The list of stretches and massages and just everything just keeps growing and growing and growing.” (Father 1)
	Adjusting to life at home	“Probably what was the most nerve-wracking thing was going from an environment where their vitals are being constantly monitored 24/7 to going home and then now you're like, how do I know he is alive? Like I said, we're first time parents, so we didn't have a sense of normal for how to take care of a normal baby and a normal situation at home.” (Mother 5)
	Financial impact	“It's a ridiculous amount of money that would've been out of pocket, even with our insurance, so that was challenging.” (Mother 8)

Table 3: Potential Strategies/Interventions to Improve the Perinatal and Neonatal Experience of Parents of Children with Anomalies at the Health Care and Societal Levels: Themes, Subthemes and Exemplar Quotes

Themes	Subthemes	Quotes
HEALTHCARE LEVEL
Creating comprehensive, consistent, and caring medical teams	Comprehensive prenatal care team	“Once we arrived at Children's (Fetal Concerns Center), just where we were at, the fact that we were talking with a NICU doctor, who even in that case, her whole deal is difficult pregnancies that end up in the NICU as opposed to just a maternal fetal specialist who sees all the stuff, but then just kind of talks you through everything that's going on.” (Father 1)
	Power of primary NICU nurses	“And they were just very, anytime I had a question or anytime I had a concern, they were like, "Just advocate for yourself. Just ask the question, just advocate for yourself." And so I did feel like that was good advice for me because I think if they wouldn't have kept saying these things to me, I might have not asked as many questions or not said, "No, this part is really important to me." (Mother 6)
	Beyond medical care	“The NICU doctors really made us feel so supported, validated, included. I'm not a medical professional, but how they all were so welcoming that I stood in on rounds, they valued my opinion. That was a huge feeling to be validated. “(Mother 13)
Providing empathetic and accurate communication	Balancing hope with reality	“Everybody was really transparent with us, but in a way, where it didn't make you worry, which was nice, because it was one of those things, where I think you just gear yourself, when you're in that field, to be able to provide good and bad news, with a level of control, that doesn't put you in a situation, where you're making the family anxious, when it comes to bad stuff, or making the family too happy, when you're like, "Hey, I got good news for you, but there could be some variables here, that are bad." Where you build them up, and then find out the bad.” (Father 5)
	Consistent messaging	“So what the woman came and told me was happening with my baby was world's different than what actually was happening. So that was a really hard point because you just took my baby from me and I can't do anything about it. And now for that first part it was a little nerve wracking, well is that really what's going on? Or are you sure? Can I talk to the actual person? It just put me on edge a little bit, especially when I couldn't hear the firsthand account myself.” (Mother 6)
	Communication etiquette	“But, some self-awareness, I would say, of if my wife is behind a curtain and she's been up since 3:00 AM feeding him in the NICU and you come in and you tell her from behind a curtain that he's going to need a kidney transplant most likely without any sort of backing, whether it’s data, or a test, or whatever, and you lay the groundwork for worst-case scenario right out of the gate, it’s incredibly overwhelming and incredibly draining, one, for a new mom who literally just delivered 24 hours ago or 48 hours ago, to just a family to hear that things aren’t what you thought it was.” (Father 4)
Engaging families in NICU care	Encouraging parent presence in the NICU	“We didn't hesitate to get our hands in there, and help out with cares, and help out with everything, to learn the what-to-dos, and what to don'ts, and stuff like that, which was, I think the biggest benefit that we could have taken out of the NICU stay, was to do that. Because when we brought him home, it wasn't as scary, as I think it could have been” (Father 5)
	Resources to support families	“Definitely, take full advantage of all the different resources that are there, because there are so many different resources. Me, personally, I didn't spend the night in the NICU. I went to Ronald McDonald every night and slept so that I could be there mentally every day. And that helped me.” (Mother 11)
	Better discharge preparedness	“You leave there with a stack of handouts and you're like, "I don't even know what to do with this." That's probably helpful for some people, but it was just very overwhelming, because that was a lot of paper.” (Mother 4)
Supporting families after discharge home	Home as a developmental ‘intervention’	“So the last couple weeks have been (at home), have been the most exciting with him. He has been smiling so much, and it just makes my heart happy. It’s the sweetest. And he’s been cooing and talking and engaging more. And seeing that transition, I mean, it was almost, it was overnight. He just went from being a newborn to all of a sudden he’s more engaged and he is looking at us, and he’s smiling and he’s reacting to us. And that’s been so fun. And I mean, it is crazy to go from the newborn stage. Now you have this baby that’s developing a personality and stuff. That’s been really fun to see. And he really is a generally very happy baby. He has his moments, but as they all do, but he’s very happy.”(Mother 4)
	Making follow-up easier	“So it was PT, OT, general surgery, cardiology, dermatology, ortho hand, ortho leg, "Oh, you need a renal ultrasound. Oh you need a echocardiogram. Oh we need X-rays. We need you do a sweat test for her sister. We need you to do blood work for her. We need a weight check. We need a pediatrician check." I would literally just drive them around to appointment after... I'd take one and leave the other one and be here and go there.” (Mother 1)
	Providing connection to other families	“I nannied for a family and the son had (the same diagnosis) as well, and so right away I was able to reach out to the mom, and that was very helpful. We texted pretty much every day, and it was just very helpful because she understood everything, so that was super amazing. And if anything comes up, I can always reach out to her and stuff, so that was really helpful.” (Mother 8)
	Supporting parent mental health after discharge	There's no one asking you every day if you're okay, or stopping in and checking on your mental health like there was in the hospital. So, the March of Dimes was great while there, but it would almost be great if there was a March of Dimes outside of that hospital environment to say, hey, we need to check up on this person because this is how long their stay was until they tell us not to do it anymore.” (Mother 2)
	Adequate home nursing support	“So one thing that they advise was having the nurses come into the house, the house calls, and just to check on him and work with him. And that helped a lot because with him having a huge cast was very hard to move or do... He couldn't do tummy time. So he couldn't do a lot of things. He couldn't even sleep well because even the back was uncomfortable to sleep. But they came and they worked with him with hands and then legs and head control. And right now, he's doing very good.” (Mother 7)
SOCIETAL LEVEL
Support for complicated pregnancies	Creating awareness about complicated pregnancies	“We have friends that have had kids, and they're like, "Oh, my God. I love being pregnant. It's so much fun. I just feel like I glow, and I love the feeling I have growing my child," and stuff like that. Whereas, for us, it was like, "No, we're on pins and needles constantly. When's the next bit of bad news coming?" (Father 5)
Support for NICU care	Affordable healthcare	“But our deductible last year is 8000. This year, we’ve already hit our deductible. In two years, it’s $16,000 for medical bills.” (Mother 1)
Support for NICU care	Paid family leave	“I used probably a bunch of vacation and stuff, that I could have obviously not had to use, had I had the opportunity to do the FMLA leave, but with that comes less pay, obviously, because it’s unpaid. But still, it would’ve been one of those things where I wasn’t constantly scratching the bottom of the barrel, to try to make sure I had time off, for one of A’s procedures, or something like that. Again, after a month, or a month to a month and a half of it, they finally started to get the picture of, “Hey, this isn’t a couple of days thing.” We ended up being in the NICU, for five months, I think, it was.” (Father 5)
Support for children (and families) with medical needs	Childcare options	“We do have them go to daycare full-time, and E’s daycare has been very accommodating and willing to learn how to take care of him, and above and beyond, like I never would have expected that they would. They learned how to vent his G-tube when he gets fussy and how to do dressing changes if he’s leaking, and just are very communicative and willing to try new things, which I think is not a standard daycare experience, so I’m very appreciative.” (Mother 5)
	Easier access to supplies/equipment for children with special needs	“They can’t go on bouncers because they don’t have core strength at all. They can’t sit in any of those… we had to buy a special highchair so that they can recline back because they have to have that.” (Mother 1)
	Availability of respite care	“There's medications I have to give him. I should probably get him on a sleep routine now that he is almost six months old. Then, there's physical therapy I should be doing with them. Then, there's trying to do oral foods I should be doing with them. Then, maybe I should be getting him on the same exact off feeds from 7:00 to 9:00 in the morning and at night or something like that. There's just so much to do to try and get in a good routine. Then, throwing a three-year-old in there…” (Mother 11)

There is NO conflict of interest to disclose.

Voices of Parents of Children with Major Congenital Anomalies: Themes from Initial Diagnosis, NICU Hospitalization, and Discharge Home

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Abstract

BACKGROUND

METHODS

Study Design

Sampling Strategy

Data Collection

Data Analysis

RESULTS

DISCUSSION

Study Limitations

CONCLUSIONS

Declarations

Funding:

Author Contributions:

Acknowledgements

References

Tables

Additional Declarations

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Version 1