Human beings are social creatures and the need for connectedness and relationship is inherent. According to developmental psychiatrists, humans are biologically “prewired” for connection even before birth (14). Within PPC, the process of attachment holds great importance although the physical connection may be brief. Fostering this connection between infant and parent as well as bonding with siblings and extended family is implemented in the delivery room, postpartum unit, and Neonatal Intensive Care Unit (NICU).

In the delivery room an infant born with a life-limiting condition is put on the mother's chest as soon as possible. Alternatively, the infant can be brought to a warmer first, dried with warm towels, and quickly assessed. The cord can be cut by the partner if desired, a hat and a diaper are placed and then the infant is returned to the mother's chest.

After birth by cesarean section, the newborn is brought to the mother and placed cheek to cheek so that she can see, hear, smell, and touch her infant. The partner or support person can hold the infant on the mother's chest or next to mom so that she can see the infant easily. The mother is recovered in a private labor room to allow privacy.

Newborns are bulb suctioned, if needed, while on the warmer or while being held skin-to-skin. For infants with severe anomalies such as anencephaly or gastroschisis, dressings are applied before returning the infant to mom. This facilitates holding the newborn comfortably. Multiple pictures of the infant alone and of the whole family are taken.

Considerations are made about the infant's physical differences when taking pictures. Usually, one picture is taken with a newborn undressed to show anomalies. For some parents, the fantasy about what their infant's anomaly might look like is worse than what it does look like. In other situations, it serves to show exactly why the infant will have a short life. This photo is printed, placed in an envelope, and kept separate from other printed photos. This gives families a choice of whether to look at the photo in the future or discard it.

Coordination with nursing leadership is done to allow for sibling and family visitation. Cultural and religious considerations are also very important. Families are asked about rites, rituals, and customs so that staff can optimize the plan of care respecting family preferences (15). Collaboration with a multidisciplinary team is key for family satisfaction.

This is a very important time for the family. It may be the only time they spend with their infant while he/she is alive. Parents are encouraged to bond with their infant by skin-to-skin holding, talking, singing, praying or anything that is important to the family. Staff prepares the family for physical changes that may be seen as the infant is dying. Changes in the infant's breathing, color and temperature are presented to the family in a calm concrete manner, assuring them that the infant will be assessed for pain and medicated if needed.

When mom is discharged to postpartum her infant remains with her. Families are given private rooms that enable them to spend time with their infant, performing parenting tasks such as holding, bathing, dressing, and taking pictures. Feeding, when possible, is encouraged as part of the bonding process (16).

In the case of a stillbirth or intrauterine fetal death, time for bonding is also important. Under these circumstances, the infant's body may have begun to deteriorate, and parents are counseled about this possibility, but without judgement as to whether the infant's body should be seen. Families may ask for staff to view the infant first or take a picture before actually seeing the infant. Allowing the family time to process their feelings affords them the opportunity to make decisions. If they initially decline seeing their infant, they may need more time. The actions of the staff toward the body can help families feel empowered to view and possibly hold their infant. Some families want to see, hold, and dress their infant no matter what their condition is. Staff remains flexible to meet the family's needs.

Families are not rushed and can keep the infant with them throughout the mother's hospital stay if desired. This is the only time they will have to parent their infant and they are encouraged to hold, bathe, dress and photograph their infant as they would have done with any other child. Cooling systems are available commercially but are not required for a body to remain in the mother's room. The amount of time a family will keep the body varies greatly. Staff education has given them the theory and strategies to help support families in meeting their desires.

While intensive care offers many infants’ curative treatments it does, by nature, interrupt parent-child bonding, thus bonding in the NICU can be challenging. Issues with lack of privacy, and the sound of monitors and alarms makes it difficult to create a calm and quiet environment. Some degree of bonding is indeed always possible. Parents are given the opportunity to help with their infants’ medical needs such as taking the temperature, feeding, changing the diaper, and helping with medical dressing. Infants in the NICU can receive intensive care and palliative care concurrently as palliative care is thought of as an additional layer of support. When, during the NICU course, there is redirection of goals of care, private space is made available and signage alerts others to be sensitive to the situation that is unfolding or that an infant has died. Redirection of care entails a plan made by the medical team with the family. The details include a timeline, religious rites or rituals, sibling and extended family visitation, memory-making, medication management of symptoms and help from consulting services (i.e., consulting surgery for removal of the ECMO circuit). Skin-to-skin holding greatly facilitates the bonding experience. NICU nurses have shared that utilizing skin-to-skin holding of a dying infant afforded an opportunity for parents to experience their infant's closeness and touch, providing comfort without the tubes and wires (17).

Bedside staff help in any way the family needs. Infants can be bathed and dressed before or after death. Some families may be hesitant to bathe the infant after he/she has died but staff help to normalize this activity by explaining the process, gathering supplies, and assisting. Reverence in caring for the body communicates respect and recognition of the importance of the infant to the family. Moreover, it is an opportunity to see their child's body without lines and their child's face free from tubes (18).

Another essential element to provide comfort to an infant is keeping them warm and dry. Again, one of the easiest ways to accomplish this is through skin-to-skin holding. Often utilized in the NICU, skin-to-skin holding has several physiological benefits including providing thermal regulation (19) and can be done by mothers or fathers. Research shows that skin-to-skin holding can maintain a stable temperature in full term and very low birth weight premature infants (19, 20), thus is utilized even with pre/periviable newborns. While in the postpartum unit, an incubator or a warmer can be used for infants having difficulty maintaining their temperature especially if parents need to have a safe place for their child while they rest.

In recognition of the fact that feeding is a basic need and a pleasure for the infant and reinforces bonding, infants are offered breast milk or formula. Feeding for the comfort of the infant and the parent fulfills an instinctual desire to provide nourishment because this is associated with life (16). The American Academy of Pediatrics (AAP) recommends feeding any child that is hungry or thirsty and who is capable of oral intake, when there are no medical contraindications, to be fed by mouth (21). The AAP also shares that the provision of medically provided nutrition and hydration is not ethically or legally required in many life limiting medical conditions, and parents have choices (21). However, in our 15-year experience, feedback from parents indicate that feeding constitutes a positive experience for both infant and parent (22, 23). Within the framework of palliative care, feeding should be focused on comfort, but not necessarily on growth and development. At this aim the medical team discusses with the parents a personalized plan for nutrition according to each infant's diagnosis, prognosis, and family preference. Even when life is short, the experience of feeding her child by breast or bottle can be extremely important to the mother. Lactation consultants offer guidance and techniques to help mothers recognize feeding cues, help newborns latch, teach mothers to hand express milk, and perform breast care.

When nutrition is an option and it is safe, infants who have muscle weakness, small mouths, or physical anomalies such as a cleft lip or palate can be evaluated by a speech pathologist. Special devices are used based on their assessment of the infant's feeding readiness to allow for safe and pleasurable feeding. If a newborn is unable to manage oral feeds, a nasogastric or orogastric tube or, if needed, a gastrostomy tube is placed. Some families learn to give feedings via a syringe or dropper. Bedside nurses provide support and education as the parents learn to use the devices for feeds. The focus of care in these instances is a balance between comfort and safety.

For infants in state of impending death drops of colostrum or breastmilk can be swabbed on their lips and mouth (colostrum care). Offering a pacifier, emptied breast or gloved finger can be used as non-nutritive options.

In the NICU, when there is a redirection of care, withholding intravenous nutrition is acceptable. In these situations, intravenous access is maintained for medicine administration to alleviate pain or discomfort.

For mothers whose infants have died, lactation consultants educate them about how to suppress their milk supply. However, some mothers may choose to become milk donors and information is given to them about the process and contact information for a nearby milk bank.

The greatest concern parents have in the face of a life-limiting condition in their infant is, will my child suffer? While most congenital life-limiting conditions with expected early demise such as anencephaly or renal agenesis are not painful, symptoms of the dying process can be distressing. Parents can be assured that all the components of their infant's comfort will be addressed. Since comfort is not merely the lack of pain, all the previously mentioned strategies are utilized first. Air hunger, gasping, increased work of breathing or agitation, can sometimes be relieved by gentle suctioning or repositioning. When non-pharmacological strategies are unsuccessful, pharmacological treatment is necessary. Opioids and benzodiazepines can be used orally or intranasally with no need of placing intravenous access. The assessment of pain or discomfort is evaluated by medical and nursing staff using approved pain scales (24) but reports by the family of discomfort are addressed immediately as well.

Many infants have physical anomalies possibly producing discomfort or pain. Depending on the anomaly, special dressings are needed for comfort. For instance, infants with limb-body-wall syndrome or with other conditions associated with exteriorization of internal organs will have a surgical dressing. Warm saline soaked gauze, covered with dry gauze and plain petroleum jelly covered with an elastic bandage will contain and protect the organs. Infants with acrania, exencephaly, or anencephaly will need a similar dressing that is covered by a hat that ties under the chin to keep the dressing intact. Despite having anomalies, staff will also point out aspects that are ‘perfect’ or ‘beautiful’ about the infant, recognizing the normal physical traits as well.

For families taking their infant home with hospice, medical and nursing staff will educate them about changes that can occur as the infant nears end-of-life, about signs and symptoms of distress, and when to call hospice with concerns. The around-the-clock coverage of hospice is reinforced giving parents a sense of continued support. A Medical Order for Life-Sustaining Treatment (MOLST) form is filled out to document family's preference concerning life-sustaining treatments for the infant.

Lastly, pain management is an essential component of end-of-life care of infants with a life-threatening condition failing treatment in the NICU. Recommendations for assessment and management of end-of-life symptoms in detail would require an entire manuscript and is beyond the scope of this article. Therefore, we invite readers to delve deeper into this subject by reading comprehensive reviews (25–27).