Supporting families in their child’s journey with neonatal encephalopathy and therapeutic hypothermia

Abstract

Neonates and families face challenges in hypothermic therapy, including trauma to parents, extreme emotions, and unfamiliarity with the medical system. Communication is an essential element to supporting parents while their children are in the NICU, and beyond, building the foundation for the ongoing relationship the family has with the medical system. Significant consideration needs to be given to the critical element of integrating the family into the care of a baby being treated with therapeutic hypothermia. Clinicians can promote healing of accumulated traumas of parents through ensuring parent’s emotional safety, facilitating a trusting relationship, and promoting parent empowerment. Connecting parents with resources, especially peer support, is an essential part of a hospital stay. In this chapter, we explore best practices to support families during and after hypothermic therapy.

1. Introduction

For parents of children who have suffered hypoxic ischemic encephalopathy (HIE), each part of their experience – birth, therapeutic hypothermia, diagnostic testing and preparation to go home from the hospital – carry an element of trauma that can have long-lasting effects. Trauma is the result of “an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening,” and trauma can have “lasting adverse effects on the individual’s functioning and mental, physical, social, emotional or spiritual well-being” [1]. In the NICU, the three E’s of trauma, the event, the experience and the effect, are daily realities for parents of infants treated with therapeutic hypothermia. The trauma-inducing event is often the birth of the baby [2], and some parents experience ongoing trauma associated with the therapeutic hypothermia treatment [3].

The effects of trauma can impact multiple parts of families’ lives, including the ability to bond [3] with and care for their child and the ability to build a collaborative relationship with the medical professionals caring for their child. Clear and empathic communication at all stages of the Neonatal Intensive Care Unit (NICU) journey is necessary for a collaborative relationship to exist between parents and medical professionals. Medical professionals in the NICU have the opportunity to positively or negatively influence the parental experience of trauma. By employing a care model that is trauma informed, professionals in the NICU can change the trauma trajectory for parents. The principles of trauma-informed care include: creating an environment that promotes physical and psychological safety; demonstrating trustworthiness and transparency; providing opportunities for peer support; leveling the power differential and recognizing the importance of all the roles through principles of collaboration and mutuality; promoting empowerment of all voices by highlighting the importance of shared decision-making and shared goal setting; and demonstrating sensitivity to cultural, historical and gender issues.

Here, we review extant data on how to support parents and families during therapeutic hypothermia and beyond. High-priority topics were identified in collaboration with parents from Hope for HIE, whose direct quotations appear throughout the review. We focus on strategies that employ trauma informed care principles to improve 1) communication, 2) integration of parents into NICU care, 3) support for parent mental health and 4) connection to needed resources. We consider these strategies across four critical time frames in the NICU journey; at birth, during hypothermia treatment, during disclosures of important prognostic information (e.g. MRI day) and as parents prepare to go home.

2. Communication

Communication is an essential element to supporting parents while their children are in the NICU. Parents are desperate for information, needing someone to help them make sense of what just happened to their child. Trauma-informed care is especially important when communicating with parents, specifically implementing the principles of safety, trustworthiness and transparency, collaboration and empowerment [4]. Existing data suggest that parents remember what they were told about their child and the way those messages were delivered for years if not a lifetime. If the practitioner seems unfeeling or uncaring, the family will carry that first impression with them for the duration of their NICU stay, and far beyond. On the other hand, if information is delivered in a thoughtful and heartfelt way, parents will remember that interaction in an entirely different light, potentially shaping their future interactions with the medical community.

2.1. At birth

“Don’t assume that families know all the questions that need to be asked. Some parents are in such a state of shock that it’s hard to think clearly, but they still need all of the information that the doctors know about their child’s condition.”

When communicating with parents during this time, shortly after the chaotic and traumatic experience of their child’s birth, it’s important to remember their mindset: shock. Parents are trying to make sense of what just happened to their baby. They need clear communication [5]. They need practitioners to take the time to explain what HIE is, what the treatment options are, and what the next minutes, hours and days will look like [5]. Parents appreciate face-to-face communication with their doctors and express that the setting of that interaction was important. Past studies have shown that the body language of providers, including sitting down with patients and families, has an impact on the perceptions of that clinician [6]. This interaction is key to making families feel safe and building the trust relationship between the provider and parents.

Information overload can make it challenging for parents to process information and think about what questions they want to ask [7]. Parents appreciate when clinicians prompt question-asking and provide more time to understand what they were being told [8,9]. In addition, they appreciate written information they could refer to as they begin to process information [5].

2.2. During hypothermia

“There are a lot of unknowns in the NICU; more structure would alleviate unnecessary stress.”

Seeing your baby in the NICU is an image burned into every NICU parents’ mind. When hypothermia treatment is involved, that means parents are often unable to hold or touch their child, and many are struggling to understand what is happening to their baby [3,10,11]. For some families, only one parent may be present at this stage, which can make communication more difficult [3,7]. Practitioners should be prepared to answer more questions at this point, likely re-explaining some of the terms and details they initially discussed after birth, allowing parents to have a better understanding of what is happening with their child.

Parents are also acclimating to the routine of rounds, which many parents consider to be one of the highest yield times to receive information about their child. The structure of rounds, in which many details are presented at once, may leave some parents feeling confused or overwhelmed [7]. In prior studies, parents have suggested having a notebook provided so they could write down questions after they were able to process the information shared [7]. Parents value when clinicians make themselves available and when teams have a set schedule for rounds, to facilitate parent presence. Each of these actions would help promote trust, but also collaboration and mutuality, making parents feel they were on an even playing field with the medical team, and helping to reduce the trauma experience.

2.3. Conversation about prognosis

“Doctors talked in a manner that was hard to understand and decipher unless you had a medical background. I would have loved for someone to put everything into layman’s terms.”

Many parents of children with HIE remember “MRI Day” as a significant milestone in their journey. At this point, parents have been traumatized by seeing their child in pain, perhaps having seen their child seize, and may have watched other invasive medical interventions, such as blood transfusions, intubation or iv placement. They are at risk for re-traumatization. The conversation about their child’s diagnostic test results, most importantly the MRI, is a crucial moment for medical providers to take time over the conversation and provide detailed explanations and avoid re-traumatization. Providers must remember that parents are learning a whole new language in the NICU. Printed materials on the basics of HIE, the cooling process, explanations of varying parts of the brain relating to the MRI, and other interventions, assist parents in absorbing information, prompting questions, and helping them understand the full picture of their newborn’s care. Parents have highlighted the importance of avoiding medical jargon and using lay speech rather than medical abbreviations [5]. Parent education and support programs can help parents prepare for life at home [12].

Existing data suggest that parents appreciate transparent communication about the MRI results and future implications of brain injury. Families expressed a strong desire for clarity surrounding the name of the diagnosis, hypoxic ischemic encephalopathy or neonatal encephalopathy. Not naming this diagnosis, particularly when families discover these terms in their own research, can damage trust in providers. Parents also appreciate transparent and honest discussion of prognostic uncertainty; while prognostic uncertainty can be a source of distress for families, it can also allow for the provision of hope [5,10,13]. They want honesty, but they also want compassion, reminding practitioners that the patient they are discussing is their child. Following the trauma-informed care principles of trustworthiness and transparency is key to successful collaboration with parents.

2.4. Preparing to go home

After a NICU stay, what was supposed to be a joyous moment – going home – can be filled with uncertainty and fear. Parents worry about how to care for their child without the support of the NICU team, but also yearn for the normalcy that home brings. At this point, they are looking ahead to the logistics of bringing this child – who may have additional needs – into their home and their life. Clinicians should prompt discussion of parent return to work and childcare plans [10]. Communication around discharge should include detailed information about the follow-up plan, how to initiate early intervention services, and how to reach the team. Transition or medical home programs, which provide an extra layer of support for parents in the weeks and months after discharge, can provide a longitudinal source of communication and support. Existing literature suggests that transitional programs can also reduce readmission rates and health care costs [14,15].

3. Integrating the family during therapeutic hypothermia

“I really wish that our NICU team was more aware of how to not only take care of the child but also the family.”

When considering how an environment can either ameliorate or exacerbate a traumatic experience, consideration needs to be given to the critical element of integrating the family into the care of a baby being treated with therapeutic hypothermia [4]. The traumatic birth event sets the stage for a power differential between medical staff and parents in which the medical team assumes control of clinical care, performs complex and urgent life-saving interventions, and the baby is physically separated from their family and moved to an intensive care unit. A parent may be left feeling powerless, grappling with the question of “why me” and may have feelings of guilt [16]. Physical separation from their newborn has a profound impact on parents, whether due to safety protocols (e.g. parent not allowed in ambulance with infant), geographical issues (mother remains at the community hospital when infant is transferred to tertiary care center) or infectious disease issues (e.g. sterile line placement). COVID-19 presents new restrictions on visitation, parental togetherness, and the ability of parents to be integrated into bedside clinical care [17]. Preventing parents from being with each other and with their baby puts them at risk for re-traumatization and long-lasting adverse effects from trauma. In the NICU, restoring a sense of family and togetherness can begin a healing process across the following four time points.

3.1. At birth

“My biggest complaint is that our son was transferred to a hospital with a NICU, but I was recovering in the hospital he was delivered in. Nobody explained to me the risks we were facing and if I had known, I would have been with him as much as possible, not sitting in a hospital bed. As it was, he died before I was discharged, and I never got to have those moments of parenting with him, which to this day 8.5 years later still breaks my heart.”

For parents of babies treated with hypothermia, the birth event is the time when the expectation of normalcy is shattered by sudden and unanticipated trauma [3,7]. Integrating families by having both parents and the baby in the same physical location as quickly after the birth as possible is essential. The first key principle in trauma-informed care is to provide a safe environment and a sense of safety can be created for these families through togetherness [4]. Post-partum mothers must be transported to the tertiary care center as quickly as can be safely achieved and kept well informed of the severity of the baby’s illness in the interim. If possible, the father or other parent, could be allowed to ride with the baby in the ambulance as the baby is transported to the tertiary care center. Welcoming the trusted support system (e.g. friends, grandparents, siblings) for the parents into the NICU is also critical to promote recovery from trauma.

3.2. During hypothermia

“Even amongst the terrible news, shock of medical things, and being under a microscope, I wanted to be a parent I wanted to participate and understand all things medical, but I also wanted to be a first time mom. I wanted to hold my child, I wanted to have hope against odds, I wanted to love and care for my baby. … I needed the space to be a parent, even amongst the 24/7 bright lights, noise and confusion.”

Parents have repeatedly reported that one of the most challenging aspects of therapeutic hypothermia is the inability to hold their baby during the treatment [3,18-20]. Restricting physical contact during hypothermia has been employed to limit potential rewarming and in the setting of severe critical illness, parents have expressed sentiments that this results in delayed bonding with their child [16] In order to attempt to restore a sense of normalcy and to re-integrate the family, a maternal holding during hypothermia study has been piloted in one institution [21]. In this study, ten participating mothers, held their baby for a period 30 min while the baby was still on the cooling blanket, during which time the vital signs were carefully monitored. The infant temperatures did not extend outside the expected range of 33–34 °C. Mothers reported in a survey that they had difficulty bonding with their baby prior to holding and that their bond was stronger after holding. Overwhelmingly, nurses supported the emotional benefits of holding, both for the parents and for themselves, in terms of increasing their empathy for the family [21].

During hypothermia treatment, another way in which to integrate parents is to involve them in as many aspects of the infant’s care as possible. Parents express a desire to change diapers, give baths, dress their babies and perform all the normal activities they had expected before their narrative so dramatically changed [10,22]. Many parents report substantial benefit from nurses making extra efforts to include them in cares; “At first I was scared to touch my son because of all his wires … the nurses were great and made me feel very comfortable.” Consistency in nurses’ approach to allowing parent participation is key as parents recover from trauma and gain empowerment and voice [5]. Critical care guidelines support the primary nursing model, which can improve consistency in care [23].

3.3. Conversation about prognosis

“The family support member of staff was a key mediator between consultants and ourselves and prompted key/challenging conversations. … You find yourselves … trying to navigate a new world and everyone around you has questions and wants updates that you are not in a position to give but having someone who has enough medical understanding to properly understand what you’re going through and to support through some of the medical conversations with consultants was the single most valuable thing at this stage of the journey.”

The day of the MRI is an important day for parents of newborns treated with hypothermia. This day can be regarded as the day in which parents find out if the treatment “worked.” MRI day has, depending on the delivery of information, the potential to have life-long adverse impact for parents. Employing a trauma-informed care model for the prognostic discussion is critical and the conversation must happen in a safe environment with parents allowed to choose whom to have with them for support. Staff members that function outside of the medical role (e.g. family support services, chaplains, spiritual advisors, etc.) can play key roles in bridging a gap for a family between highly medicalized situations and layman language. Having important discussions with both parents present is a high priority as the burden for one parent to report back to the other can add trauma [7]. Parent perspectives should be included in the clinical team’s assessment of an infant’s current status; parents are likely to have a unique understanding of their child’s interactivity and level of pain. Discussions of prognosis should begin with an assessment of the parent’s understanding and information needs. Clinicians should ask permission before proceeding with discussion of prognosis and tailor the discussion to meet the parent’s information preferences. After the delivery of prognostic information, clinicians should ensure parent understanding through the use of open-ended questions and/or a teach-back, in which clinicians ask parents to review the information that was shared.

3.4. Preparing to go home

“Nurses inviting you to take on the cares, at first the cot side felt like a real barrier, and I felt like I needed to ask permission to hold my child. My husband didn’t feel so comfortable carrying out cares, he felt like he was interfering even 18 months later he has never quite overcame this, that early time is such a key factor in building confidence, as it only gets harder when you get home.”

As days in the NICU go by, more of the care of the baby is typically assumed by the parents and less by the nursing staff. Clinicians should provide repeated, hands on instruction around medication administration, infant positioning, and medical equipment. This transition is challenging for some families and particular attention should be paid to integrating fathers or significant others into care [24]. Planning for discharge and involving parents in the discharge plan is key; “They really didn’t involve us much until they had to prepare us for bringing him home and even that was not enough.” Particularly parents of children leaving the NICU with complex health care needs require careful planning and follow through on outpatient referrals. Parents play a key role in their child’s rehabilitation after brain injury; physical, occupational, and feeding therapy in the hospital should include detailed instructions on how parents can continue to optimize their infant’s neurodevelopmental trajectory at home.

4. Supporting parent mental health

Parents of infants treated with hypothermia are at high risk of symptoms of anxiety, depression, and post-traumatic stress [22]. Many parents experience feelings of guilt or blame; others experience repeated losses and grief [18]. Parents may mourn the loss of the birth experience they planned, the missed opportunity to hold their child after birth, or the lack of certainty in their child’s developmental trajectory. Accumulated traumas can undermine a parent’s ability to process medical information and care for a child with medical complexity. Clinicians can promote healing through ensuring parent’s emotional safety, facilitating a trusting relationship, and promoting parent empowerment. Each stage of the hypothermia journey presents unique opportunities to support parents in the short and long-term. Clinicians have an imperative to provide parents with the support, skills, and resources they need to thrive in the NICU and beyond.

4.1. At birth

“After a traumatic birth, the entire family is traumatized, you find yourself thrust into an unknown world and your baby is taken away to be cared by other people in a place (NICU) where you don’t belong or actually even feel wanted. PTSD is real and I think emotional support for the families is a must.”

Many parents of infants with HIE experience a similar course: a normal pregnancy taken to term, followed by perinatal crisis and urgent infant delivery. Infants often need aggressive resuscitation in the moments after birth and immediate transfer to an intensive care unit. For some families, this urgency requires transfer to a different facility. Mothers are often experiencing health complications of their own and may be under anesthesia.

Existing data suggest that the birth experience represents the start of an ongoing journey of loss. Many parents are mourning the loss of a normal birth experience, including the opportunity to hold their baby after birth and experience a typical labor [3,10]. Many families are dealing with dual crises: infant medical complications can amplify the challenges associated with maternal health needs. Some mothers require pain medication and ongoing monitoring, which can make it challenging to process complex medical information [7]. Some parents may be experiencing feelings of guilt or blame about delivery [18]. Clinicians should explore and name the anticipated challenges of this period, including naming the loss of the typical birth experience and addressing feelings of guilt. NICU clinicians should partner with maternal clinicians to ensure that any parent mental health needs identified prenatally continue to be addressed in the postnatal period.

4.2. During hypothermia

“We’re in shock, despair and feeling completely empty. They should be ready to give us all the answers we want to the most obvious questions that any parent in that situation would ask.”

During the initiation and duration of therapeutic hypothermia treatment, parents may be physically separated from their child. For parents who can be present at the bedside, the inability to hold their baby, high acuity of care needs, and equipment at the bedside can be a source of immediate and long-term trauma [3,5,16,19]. Many families experience feelings of shock during this period, making it challenging to process the many details of infant care. These challenges can be compounded by visitor restrictions or policies that allow a limited number of parents at the bedside at a time [17]. Existing data suggest that parents feel burdened by the need to translate information to other family members [7].

All parents should receive mental health support during this period; clinicians should proactively screen parents for symptoms of anxiety and depression and refer high-risk parents for additional services. Many parents may derive additional support from pastoral care; chaplains should partner with medical teams when relevant and be included in major medical conversations. Child life services can offer support to siblings, to help young children make sense of an unfamiliar setting.

4.3. Conversation about prognosis

“The wait and see approach while preparing us only for the worst most severe developmental outcomes was cruel really. Our daughter’s sprognosis described in only bleak terrible ways especially by the doctors … It compounded the shock, it made adjusting and coming to terms with what happened even harder.”

Many parents recall initial conversations about prognosis as key to their NICU experience. While these conversations can occur throughout an infant’s course of treatment, they often gain detail and stakes after brain imaging. The conversations often include substantial prognostic uncertainty, which multiple studies suggest is an acute and longstanding source of distress [7,10].

Major conversations about prognosis should include team members to serve as added emotional support for parents, including social workers, case managers, chaplains and/or palliative care clinicians [25]. Many parents value the presence of their child’s primary nurse, who they often view as their primary communication source [7]. NICUs should develop processes to ensure that mental health clinicians follow-up with families after major conversations with the clinical team.

4.4. Preparing for life at home

“Help provide us with how to truly prepare for being home. Make sure the psychiatrist comes through … I should have been flagged for PTSD and post-partum very quickly.”

Periods of transition are high-risk times for parent well-being; many parents experience stress and anxiety as they prepare for life at home [24, 26]. In a study of parents of infants with neonatal seizures, many of whom received hypothermia treatment, over half experienced symptoms of anxiety, and one-third experienced symptoms of depression at the time of discharge [22]. Up to one-quarter of all parents experiencing a NICU stay will have long-standing symptoms of post-traumatic stress [27,28].

Mental health clinicians in the NICU, for example, social workers, rarely include wraparound services to support families longitudinally. All parents should be screened for mental health needs during their NICU stay; those parents in need of additional support should be identified and referred to appropriate services. Transitions programs have been used to support transition from the NICU to home, and can decrease hospital utilization after discharge [14,15]. Transitional and medical home programs should include social workers or other clinicians attuned to parent needs.

5. Connecting families with resources

Clinicians have the opportunity to decrease the impact of trauma families experience by providing resources that will give families information and support they need for the journey ahead, no matter what outcome they may face. The principles of trauma-informed care that are applicable for developing best practices in the area of connecting families with resources include transparency and trustworthiness, peer support, and addressing cultural, historical and gender issues.

The authors of a major review on recommendations for psychosocial support in the NICU conclude, “Parents who receive peer support have been found to have increased confidence and well-being, problem-solving capacity, and adaptive coping, perception of social support, self-esteem and acceptance of their situation. Further, parents feel more empowered and interact with, nurture and care for their infants to a greater degree during more frequent visits to the hospital, leading to a shorter length of stay for their infants. Parental stress and anxiety, as well as depression, are all reduced. Peer support therefore offers a ‘legitimate’ and ‘unique form of assistance that is not typically met by the formal service system’ and one that cannot come from any other source.” [29].

Peer support also gives validation and space for storytelling, which can be healing for families, and helps other families with their own experiences to glean how others have processed this unexpected NICU experience. In the HIE community, it is a common theme for families to feel out of place in a sea of premature babies, and with so many resources being dedicated to supporting families of premature babies. Many large organizations that support parents of NICU babies do not specifically have support materials and connections for families whose children go through therapeutic hypothermia and hypoxic ischemic encephalopathy.

“So many babies are in the NICU because they are preemies. It was very scary to have never heard of HIE, or what that meant for our family. The staff was very friendly, but as parents we felt alone. Lots of unknowns and “wait and see.” While understandable, parents need a ballpark, resources, and connections to find others who can help guide them. I found Hope for HIE on my own. I’m so glad I did, but welcoming parents while in the NICU would be so comforting.”

Aligned with the quote above, families need to be connected to a variety of different resources, depending on their individual needs and family dynamics. Families seek clarity connections to peer-to-peer support, either during their hospitalization, or upon discharge. For families who experience perinatal loss, connecting to loss groups and facilitating referrals is particularly important [25].

5.1. During hospitalization

“We felt at the time that we were being told conflicting things every time we spoke to a doctor and that we were being purposely kept in the dark, it really damaged our trust in them. Some sense of the complexity/uncertainty of what was going on would have really helped us at that time. Another cooling baby was admitted to the NICU a few days after ours. It was only when I saw how active that baby was, and then saw the baby discharged, and mine was still comatose, that we realised ours wasn’t a straightforward cooling journey. No one directly told us. In addition, having things in writing (flyers, leaflets, even just a sketched summary of the MRI, etc.) would have been very helpful - I kept asking but was never given anything. It was very hard to keep track of things we were told, information would slip out of my brain as soon as it was said, and something physical to refer to would have helped a lot.”

Some families may appreciate being connected to support during their child’s hospitalization. Many NICUs may have internal resources to provide. Peer-to-peer support networks including veteran parents can help parents navigate the NICU hospitalization [12,30]. For those that do not, it is suggested to connect to known organizations that support families. Clinicians should ensure families receive HIE-specific resources in addition to resources geared towards the broader NICU population.

5.2. After loss

Unfortunately, loss is a reality for too many families. However, being connected to bereavement resources, including mental health support and providers, and local and online support communities, can help families feel supported in their grief. For those facing loss in the NICU, families expressed the need for involving palliative care sooner, and how positively impactful that might have been for their experience [25,31]. Many nonprofit organizations are dedicated to NICU bereavement support, and organizations like Hope for HIE offer support across all outcomes from HIE and run a specific online bereavement support group.

5.3. Preparing for life at home

As families begin to look at the prospect of discharge, and what life may be like, connecting to community resources outside of the NICU for their specific needs and family dynamics is crucial. Most NICUs employ social workers, and it is highly encouraged to utilize this resource to ensure families’ needs are met for a smooth transition home. Whether that is looking at home nursing, enrollment in early intervention, or connecting to community and online support, there is rarely a time that families feel that they were presented with too many resources.

Families appreciate referrals to mental health supports or therapies; enrollment in various support programs such as Medicaid, respite, childcare options for medically complex families, early intervention therapies, sibling support; and referrals to peer-to-peer support groups - both in-person and diagnosis-specific. Dynamics in the family, such as gender, relationships, and cultural differences, need to be considered and addressed. Existing peer support organizations offer specific support for a variety of cultural differences, gender norms and family dynamics, including a specific place for dads to connect, single parents, adoptive and foster parents, parents who identify as LBGTQIA+ and geographical support.

6. Conclusion

For parents of a child undergoing hypothermia treatment in the NICU, this may be the most traumatic experience in their life, filled with fear, anxiety, confusion and sadness. NICU providers have an opportunity to positively impact parents through trauma-informed care. Keeping a focus on ameliorating the effects of trauma can have potentially life-changing effects for that family. This chapter explored the ways providers can impact families through communication, involving parents in the care of their child, recognizing the mental health aspect of parents while their child is hospitalized and connecting families with meaningful resources as they prepare to return home after their hospital stay. Practitioners have the power to mold and form parents’ views on the medical community at large, forming stronger bonds that can carry through their child’s lifetime of interactions with their medical team. For practitioners, this is a foundational moment in building a relationship with not only that family in that moment, but that family’s feelings about the medical community for years to come.

Practice points.

• Communication amidst therapeutic hypothermia is challenging; parents desire timely, transparent, and consistent communication with clinicians.

• Parents value opportunities to participate in their infant’s clinical care. Programs should work to integrate parents into clinical care in the acute period and empower them to lead clinical care and rehabilitation as they prepare for life at home.

• Parents of infants treated with therapeutic hypothermia are at risk of sustained mental health challenges. Clinicians should proactively identify parents at highest risk and provide longitudinal mental health support.

• Peer support is a critical aspect of care for children treated with therapeutic hypothermia; clinicians should be aware of available resources and empower families to connect with peer support organizations.