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Special Series: Palliative Care

Is This My Home? A Palliative Care Journey Through Life and Death in the NICU

A Case Report

Walters, Aurora RN, BSN, RNC-NIC; Grosse, Jordan RN, BSN, RNC-NIC

Editor(s): Fortney, Christine A. PhD, RN, Section Editor

Author Information
doi: 10.1097/ANC.0000000000000697
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Abstract

Pulmonary vein stenosis (PVS) is the narrowing of one or more pulmonary veins, leading to decreased blood flow from the lungs to the left atrium. Subsequent pulmonary hypertension is common with PVS due to pulmonary congestion and increased venous and pulmonary artery pressures.1 The combination of PVS and the associated pulmonary hypertension (PH) that many of these infants acquire leads to higher mortality and morbidity rates.1,2 There are several literary publications about the association between bronchopulmonary dysplasia in preterm infants and subsequent PVS.1–3 Preterm infants with PVS are usually diagnosed between 4 and 6 months of age.3 Without aggressive treatment, patients with stenosis of multiple pulmonary veins and other existing comorbidities such as congenital heart disease, prematurity, or PH will have rapid disease progression that will be fatal.3

Clinical findings of PVS include shortness of breath, pale or cyanotic color, tachycardia, tachypnea, and fatigue. There are several approved treatment modalities that are used to treat mild to moderate cases of PVS. These interventions may include transcatheter interventions (balloon angioplasty), surgical repair, medical therapy, and stent implantation. In some instances, a heart-lung or lung-only transplant may also be presented to families as a last resort. Unfortunately, many infants will still die while waiting for a transplant.

To date, there are no options that “cure” the most severe cases of PVS and this illness is still considered life-limiting in such instances1,2,4,5 In this situation the infant and family would both benefit from an early palliative care consult to supplement the therapeutic care given in the neonatal setting.

PATIENT INFORMATION

Imagine you are stuck in a room with one glass window. Outside of your room is a busy street where people pass you by all day and all night. In your room you have your bed with your favorite toys, and music or sometimes cartoons are playing in the background. Your 4 walls never change unless there is a party going on, and then decorations are put up all around you only to fade into the background when the party is over.

Your mother, father, and brother visit often, but do not sleep there with you. There are many familiar faces who care for you, but never stay more than 12 hours at a time. You have a structured schedule to include feedings, medications, therapy sessions, naps, bath time, and tons of cuddling. You are stuck in this room for months having some good days and some bad days. You have respiratory treatments around the clock and undergo endless painful procedures as the months keep passing by.

Would you still find a reason to smile everyday if this was your life? He did, and his name was Aaron (Figure 1).

FIGURE 1
FIGURE 1:
Photograph of Aaron at 15 months old.

Aaron was born at 27 weeks' gestation. He lived for 11 months in the neonatal intensive care unit (NICU) at Children's Hospital Colorado (CHCO). He was born at an outside hospital and was discharged home after 5 months in their NICU. Aaron went home on 1/16th liters per minute (lpm) O2 via nasal cannula, a diuretic, and a nasogastric tube to supplement his oral feedings. He went home accompanied by his mother, father, and 6-year-old brother. His active diagnoses at the time of discharge included bronchopulmonary dysplasia, feeding difficulties, anemia of prematurity, bilateral grade one intraventricular hemorrhage, and a right cerebellar hemorrhage.

Three weeks after his initial discharge, Aaron's parents brought him to the emergency department (ED) at CHCO. The clinical findings on his return included significant tachypnea, increased work of breathing, increased nasal secretions, and poor appetite. He was diagnosed with an upper respiratory tract infection and admitted to the pulmonary floor. He remained admitted for 6 days required oxygen support of up to 6 lpm via heated high-flow nasal cannula (HHFNC) and full nasogastric feedings. After he was weaned to 1/4 lpm O2 nasal cannula, he was discharged home with his family.

The next day, Aaron returned to the ED for increased work of breathing and refusing all feeds by mouth. This time he was admitted to the NICU and placed once again on HHFNC. The NICU team was unable to wean his respiratory support, and on his fourth day of his second hospital admission at CHCO an echocardiogram (ECHO) was performed. The ECHO showed he had moderate right and left upper and mild right and left lower PVS, severe hypertrophy, moderately dilated right ventricle, mild dilation of the right pulmonary artery, and moderate dilation of the main pulmonary artery. Cardiology was consulted for PH associated with PVS, and Aaron was scheduled for cardiac catheterization within the week.

For the next 11 months, Aaron lived in the NICU as his multidisciplinary team treated his PVS and PH. After his PVS was diagnosed as severe and life-limiting, a palliative care consult was ordered. Per the cardiologist and due to the severity of his PVS and PH, Aaron was given about a 90% chance of mortality by age 2 even with aggressive medical therapies. With this news, his parents appeared to have a realistic understanding of his disease and they communicated that they understood that Aaron would not have a long life. Their initial goals of care included giving him the longest life possible and that they wished to hopefully get him home before he died. The NICU palliative care (PC) team had several nurses that joined Aaron's primary nursing team. The NICU PC team, along with the hospital-wide PC team (REACH), would collaborate alongside his medical team to provide physical, emotional, and spiritual comfort to Aaron and his family for the next 11 months. The timeline demonstrates Aaron's medical course in the NICU (Table 1).

TABLE 1. - Timeline of Aaron's Medical Course
Age Summary of Clinical Findings Diagnostic Testing/Finding Interventions
5 mo Presented to CHCO ED with tachypnea and congestion
One day after discharge, returned to ED for increase work of breathing and refusing all my-mouth feeds
Positive rhinovirus
Diagnosed with pulmonary vein stenosis
ECHO: moderate right upper, mild right lower, moderate left upper and mild left lower pulmonary vein stenosis; moderate septal flattening; right ventricle moderately dilated with severe hypertrophy
Admitted to pulmonary floor requiring 6L HHFNC and NG feeds; hospitalized for 6 d and discharged home
Admitted to NICU; escalated to 6L HHFNC and unable to wean; cardiology consulted for ECHO findings
6 mo
Increased WOB and respiratory support
First cardiac catheterization laboratory visit
ECHO: worsening LLPV gradient
Second catheterization laboratory visit
Successful balloon angioplasty of LUPV; unable to balloon RUPV due to severity of stenosis; iNO 40 ppm
Right heart catheterization demonstrated severe PPHN; LUPV and RUPV ballooned
Requirement of ballooning of veins within 3 wk concerning for very poor prognosis
Care conference with family to discuss pulmonary vein stents vs no treatment; hospital-wide PC team consulted
7-8 mo Severe reflux and need for long-term tube feeds
Tentative plan for discharge put on hold due to increased respiratory support
ECHO showed worsening PVS
Third catheterization laboratory visit
GT placed; postoperative complications including intubation, FiO2 100%, and low-dose dopamine.
Four coronary drug-eluting stents placed
10 mo Unable to extubate and decision for tracheostomy discussed Tracheostomy placed; postoperative complications included PH event; parents decided to move forward with aggressive treatment following discussions of limiting escalation of care
11 mo Worsening PPHN on ECHO Fourth catheterization laboratory visit RUPV near complete occlusion; LUPV and RUPV stents ballooned; fifth stent placed
12 mo Failed trail on home ventilator iNO restarted along with medication therapy of bosentan and sildenafil
14 mo Remained stable Fifth catheterization laboratory visit
Care conference with family
Right heart catheterization demonstrated severely elevated right heart pressures; LUPV severely stenotic—stent dilated; stent placed at distal narrowing
Discussed heart catheterization results had changed for the worse; MOC feared longer hospital admission and taking infant home just to only to die; goal was to schedule next catheterization in 3-6 mo
15 mo iNO stopped with goal to trial home ventilator POC decided to not reinitiate iNO therapy; modified DNAR ordered
16 mo More fatigued and less interactive Increased pulmonary edema requiring high oxygen and increased diuretics
Moved to serenity suite to spend quality time with family
MOC stated prolonged hospitalization was not the quality of life she wanted to have for her child; the suffering was starting to outweigh the happy moments
Decision made for full comfort care; started scheduled morphine and ativan
Aaron passed away peacefully in his mother's arms surrounded by his family and primary nursing team
Abbreviations: CHCO, Children's Hospital Colorado; DNAR, do not attempt resuscitation; ECHO, echocardiogram; ED, emergency department; GT, gastrostomy tube; HHFNC, heated high-flow nasal cannula; iNO, inhaled nitric oxide; LLPV, left lower pulmonary vein; LUPV, left upper pulmonary vein; MOC, mother of child; NG, nasogastric tube; NICU, neonatal intensive care unit; PH, pulmonary hypertension; POC, parents of child; PPHN, Persistent Pulmonary Hypertension of the Newborn; PVS, pulmonary vein stenosis; RUPV, right upper pulmonary vein; WOB, work of breathing.

During those 11 months, Aaron also had multiple sessions a week with occupational, speech, and physical therapy. His family and his primary nurses created a schedule for him that included play time, reading, cuddle time, and his favorite, bath time. A month after his third cardiac catheterization visit, Aaron was still unable to wean back off the ventilator. The option of a tracheostomy for Aaron was presented to his parents, and despite the ethical challenges that this surgery posed for some staff members, the parents proceeded with the surgery.

As the teams worked together to respect and guide the autonomy of his parents in their decision-making, several of the decisions they made were not well supported throughout the NICU team. The decision to proceed with the tracheostomy brought many opinions and questions about whether a tracheostomy would do more harm. Was this invasive surgical procedure beneficial in an infant with a life-limiting diagnosis? Would placing a tracheostomy make decisions harder for his parents down the road? These were several questions that were brought up among members of the multidisciplinary team. Ultimately, the parent's decision to move forward with a tracheostomy fell in line with the best interest principle in medical decision-making. Aaron's parents expressed noticeable suffering in Aaron while he was intubated. It was reasonable to believe that Aaron's parents were making this decision out of what they thought would be in the best interest for Aaron and aligned with their goal of care to extend his life.

Team members were able to better support this decision after effective communication about the family's goals of care and how a tracheostomy may enhance Aaron's quality of life. There is literature to support how parent perspectives regarding infant suffering guide parental decision-making. Literature also states that parents with valued clinical guidance who have a central role in decision-making will have increased care satisfaction and many families will go on to have better end-of-life experiences.6

Unfortunately, Aaron had postoperative complications after the tracheostomy surgery. He had a severe pulmonary hypertensive event and was placed on high-frequency ventilation, inhaled nitric oxide (iNO) of 40 ppm, and multiple high-dose vasopressors. Despite the escalation of support, he remained very critically ill and was given a grim prognosis. His NICU team had several conversations with the family regarding limiting the escalation of care and pursuing comfort care at that time. Aaron's parents were not ready to make that decision at that time and requested that full life support continue.

Encouragingly enough, several weeks after his tracheostomy surgery, Aaron was thriving and meeting developmental milestones. He remained on the hospital ventilator, but was now eating some pureed foods by mouth, blowing kisses to his biggest fans, and constantly flashing his toothless smile. Even through his lengthy hospital stay and numerous medical procedures, Aaron remained completely neurologically intact.

DIAGNOSTIC ASSESSMENT

Within the next several months up to Aaron's first birthday and beyond, Aaron returned to the cardiac catheterization laboratory 2 more times, received several more stents, and pulmonary vein ballooning. He was never able to tolerate the home ventilator and could not be sustained off iNO. Due to the rapid progression of his disease, alternative treatment options were presented to his parents. These included more frequent stenting and ballooning in the catheterization laboratory, a possible heart/lung transplant, alternative PH medications with potentially negative side effects, and comfort care.

After much consideration of all options and lengthy discussions with the team, Aaron's parents made the informed decision to stop all invasive treatments and focus on full comfort care. They expressed that their wish for Aaron was for him “not to have to live another year in the hospital” or “have any more pain and suffering.” Aaron's parents also stated that they “did not want him to finally get to go home only to die” and would like for his end-of-life care to take place in his “second home,” the NICU.

A modified “do not attempt resuscitation” (DNAR) order was placed. Aaron's DNAR stated no compressions, no inotropic/vasopressor medications, no defibrillation, and no other escalation of care above the support already in place. The order did allow for increased oxygen for comfort. The hospital-wide PC REACH team assisted in placing orders for the medications to keep Aaron comfortable and he never returned to the cardiac catheterization laboratory.

THERAPEUTIC INTERVENTIONS

After Aaron's second heart catheterization, he and his family had a palliative care consult by the hospital-wide palliative care team. He also had several NICU PC nurses on his primary nursing team. Whenever new or increased life-extending medical therapies were initiated or discussed with parents by the multidisciplinary team, these PC teams would also be present to support Aaron's parents in how each of these decisions would align with their goals of care, assess their perspectives of Aaron's suffering and to guide them in their decision-making process.

Aaron's palliative care consisted of making his life in the NICU as normal and comfortable as possible. His team made sure that he had appropriate physical and social interaction for infant development. He had a schedule for sleep, play, therapies, and bath time that mimicked a home environment. During his time in the NICU, many memory-making crafts were created by his nurses for his family and included footprint superheroes, monthly hand and footprint pictures that captured his height and weight, and hundreds of smiling pictures on his personal camera.

An important aspect of the NICU PC team's mission is to provide personal experiences for the families that will enable them to have long-lasting memories of their infants. Aaron's parents had several sentimental requests that his primary nurses and NICU PC team were able to facilitate. The first request was to have a themed first birthday party and to have Aaron be able participate in his smash cake. The team was able to plan and coordinate a party complete with decorations, friends and family, and a smash cake that Aaron hesitantly tasted. His decorations stayed up in his room for weeks. He even wore a party hat that resembled a king's crown for several days afterwards.

The second request his parents had was several months later when Aaron was 15 months old. It was shortly after his parents decided to pursue comfort care and they desired a way for Aaron and his brother to bond more. Aaron was deemed the “Batman” of the NICU, and his brother thoroughly enjoyed superheroes, so his mother thought a superhero party would create a treasured memory for her boys. Aaron's team got together and coordinated the party. They had food, decorations, and every primary nurse and primary respiratory therapist came wearing a superhero tee shirt. The occasion was extra exciting because Aaron's nurses received approval to have a Batman character visit the party. Batman went above and beyond making a speech about how Aaron was the true superhero fighting every day, and his brother was his sidekick. He brought gifts for both Aaron and his brother and read them a story. There was truly not a dry eye in the room among the staff and Aaron's family. Aaron on the other hand was completely enthralled by this masked crusader.

The final wish that Aaron's parents had been hoping for, ever since he was admitted, was for Aaron to go outside. Aaron had not been outside in almost a year. His parents stated that they “really wanted him to see the sky, feel the sun, and smell the trees before he died.” In the NICU at CHCO, it is generally against protocol to take infants who are on the hospital ventilator outside of the ICU. It took a lot of perseverance, a generous attending and a DNAR, but Aaron, his family, and a team of staff members were able to get him outside. He appeared very content and interested in his surroundings (despite his comfort medications that usually made him sleepy at this point) and his parents were smiling ear to ear as they held his face toward the sunshine. To this day Aaron's parents express how they cherish these memories of Aaron and how they overshadow the bad days that he had in the NICU.

As Aaron faced varying health challenges, the PC care team continued to meet with his parents to make sure that their goals and concerns for him were addressed and that Aaron remained comfortable. Due to work, school, and physical barriers, Aaron's family was unable to visit him every day. They did remain fully invested in his care and called at least once a shift to check in. The communication that was exchanged between the nurses and the parents was pivotal in directing his goals of care and empowering the nurses to relay the requests and needs of the family to the rest of the team. This was especially important during the last few weeks of his life. It was at this time after Aaron's family made the decision to pursue comfort care that many NICU staff and other members of the multidisciplinary team began once again exhibiting tension of values.

While Aaron's disease was killing him on the inside, on the outside he continued to smile, blow kisses, play, and wave at everyone who passed by his room. Having such an engaging developmentally appropriate infant in the NICU is rare. It was verbalized by several people that Aaron “just doesn't look or act that sick.” The emotional distress of the situation challenged the staff and several team members stated that his parents should have their parental rights taken away for “choosing” to end Aaron's life. A few of the medical specialists wanted to continue to pursue aggressive treatments even though the high mortality rate had not changed, he was naturally declining, and Aaron had already been in the hospital for almost a year without significant disease improvement. It took immense support and advocacy from his attending neonatologists, the PC teams, and his primary team, to protect his families' decisions and goals of care for Aaron and to address the tension between the NICU staff.

Aaron's primary nursing team faced adversity in their support of his family. The primary nurses received many negative comments regarding their support of the parent's decision. These nurses had long decided as a team that no matter what personal views or opinions each of them had about Aaron's illness or his family's decision, they would remain united. They provided thorough and transparent communication to one another within shift report to maintain continuity of care and support for his parents.

To help alleviate some of the moral and ethical challenges of this case, the NICU leadership offered Resiliency, Education, Support for the Team (REST) team meetings for the staff. At CHCO, REST team meetings consist of a licensed psychologist and licensed clinical social worker who are not involved with the case and staff members that are involved in a difficult case. These meetings are a safe place where staff from any discipline can go to communicate their fears, identify ethical or moral distress, or opinions regarding a patient or case. When Aaron transitioned to comfort care, his lead neonatologist also set up provider conferences for his team members (without family present). This allowed the team to evaluate how everyone was doing and to have a space to admit the decision that Aaron's parents made was uncomfortable and hard for most, but moving forward how could we best support them. To provide consistent care and eliminate nursing distress, Aaron did not have one shift that was not covered by one of his primary nurses during the last few weeks of his life.

Follow-up and Outcomes

Within 10 days of starting full comfort care, Aaron passed away peacefully in his mother's arms. In those 10 days, he had become increasingly uncomfortable and less engaging in normal activities. His comfort medications were increased, and he and his family moved into the “Serenity Suite” in the NICU. This suite is a unique and valuable resource in this NICU. The suite allows families a larger space to spend unlimited time together in an artistically decorated area that mimics a home-like environment, all while accommodating the medical necessities of hospital life. On the day of his death and at the request of his parents, Aaron was surrounded by his family, his primary nurses, and many members of his interdisciplinary team. There were tears, many tears, but there was also laughter and smiles in remembering a little boy who had brought abundant joy to all the people in that room.

DISCUSSION

Pediatric palliative care is defined by the World Health Organization as “the active total care of the child's body, mind and spirit, and involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child's physical, psychological, and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centers and even in children's homes.”7

The American Academy of Pediatrics and the National Association of Neonatal Nurses both recommend that palliative care be a standard of care in the NICU.8,9 With the advancement in neonatology, infants with complex life-limiting or life-threatening illnesses are surviving past the newborn stage and living a large part of their first year or beyond in the NICU. In 2013, with a steady increase in the number of complex infants and a noticeable decrease in staff morale, the level IV NICU at CHCO developed a multidisciplinary NICU-dedicated palliative care team.

The original team consisted of just a few RNs, a licensed clinical social worker (LCSW), and a chaplain. These initial staff members had a passion for improving care for infants with life-limiting illnesses and building the resources to do so. As of date, it consists of over 20 RNs, several LCSWs, chaplains, clinical assistants, a child life specialist, neonatal nurse practitioners, neonatologists, and respiratory therapists. The NICU PC team recruits its members by accepting nurses and staff members with an interest in this unique NICU population. They must also be willing to obtain specialized palliative care and bereavement training and education.

The LCSW, the chaplain, and the child life specialist all played a role on the NICU PC team for Aaron. The social worker checked in with his parents frequently and made sure that not only were their psychosocial needs being met, but also addressed any financial burdens. The chaplain would stop by to offer spiritual support or to get one of Aaron's famous smiles. The child life specialist was crucial in providing support to Aaron's brother both while he was admitted and during his end of life and death. She would communicate events and situations to him in a developmentally appropriate way. She was by his side and explained that Aaron had died and waited with him in case he had questions, fears, or needed to leave the room during the emotional times. It requires a multidisciplinary team approach to effectively meet every need of an infant and family receiving palliative or end-of-life care.

The NICU PC team works closely with the interdisciplinary hospital-wide pediatric palliative care team (REACH), and rounds with them on current palliative care patients in the NICU on a weekly basis. The NICU PC team also collaborates with the perinatal team within the Colorado Fetal Care Center at CHCO. When a fetus is diagnosed with a fatal or life-limiting disease, the NICU PC team becomes a part of the future family meetings and a primary nursing team that consists of palliative care nurses is established prior to delivery. The primary palliative care nurse assigned for that delivery then does a meet and greet prior to birth and completes a heartbeat recording that the team then puts into a stuffed bear for the family. The NICU PC team finds that this first step in memory making is vital for many of these families whose infants are born and do not survive past the delivery room. The NICU PC team nurses also become primary nurses for any infants in the NICU with life-limiting or life-threatening illnesses or diseases.

Each shift, the NICU has one PC resource nurse from the PC team who is available to the bedside nurses who may have palliative care questions, need assistance with memory making, or to support with end-of-life care. The nurses on the PC team in the NICU all acquire supplemental training specific to palliative/end-of-life care and bereavement. Many of the nurses on the team have obtained their End of Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) certifications, have participated in specific perinatal/neonatal bereavement training for healthcare providers, and have attended national palliative and hospice conferences. Several nurses on the team are certified in Perinatal Loss Care (CPLC) or are certified Hospice and Palliative Pediatric Nurses.

The NICU PC team meets quarterly and each year holds a 1-day NICU palliative care education for other nurses from the NICU or other hospital units that are interested in pediatric palliative care. Topics presented at these education days include what is palliative care, communication strategies within palliative care and end of life, correct documentation at end of life, memory making, and a NICU parent panel. Survey feedback has proven that these education days have been very beneficial for staff and improved comfort levels when caring for infants receiving palliative care or end-of-life care. The PC team in the NICU also provides an extensive selection of memory-making options for families, including art and canvas work, fingerprint jewelry, hand/foot molds, pictures, clothing, handmade blankets, and unique memory boxes.

Another aspect of the unique care that this NICU PC team provides is the availability of the “Serenity Suite.” This suite was designed with family-centered care in mind, allowing families to “live” comfortably with their infants during their infant's final days, weeks, or months, or until they transition to home hospice. Supplied by generous donors, the serenity suite is a dual room separated by a sliding door and is beautifully decorated. The first area is for the infant with a wooden crib and changing table to capture the essence of a nursery instead of a hospital room. The other area has a queen bed with luxury linens, table and chairs, armoire, television, and a private bathroom. If parents wish to lie in a bed with their infant, the wall art above the queen bed shifts to reveal a monitor, an oxygen source, and multiple outlets.

During the last 10 days of his life, Aaron and his family were moved to the Serenity Suite. It allowed the whole family to be together and spend precious time with Aaron in a place that was apart from where he had previously spent the last 11 months.

The CHCO NICU has created a thriving palliative care team, but there are still barriers that the team endures. Improving the resistance to palliative care among some providers, increasing funding, and team member recruitment are several of the goals that the team continually aims for to provide consistent palliative care in the NICU. Regardless of these limitations, the feedback from families and staff has been overwhelmingly positive regarding the palliative care team in the NICU.

The palliative care team worked as a part of the multidisciplinary team to provide Aaron with comfortable and life-extending care until his parents made the decision to not escalate medical care any longer. It is important to actively listen to families, identify goals of care, and respect their timeline. Aaron's parents were not ready to make the difficult decision to pursue comfort care after he declined when he received his tracheostomy. With consistent support, transparent communication, and encouragement, they were eventually able to make the empowered, informed, and cohesive decision that they did. They were able to have a voice and define quality of life for their son and not just mourn his death but celebrate his life in memories as well.

Aaron's case highlights the positive outcome that a structured palliative care team in the NICU can have. Through strong communication, excellent teamwork, and a dedicated palliative care team with a mission to provide Aaron the best quality of life, his parents were empowered and had the autonomy to make reasonable compassionate decisions for their son.

CONCLUSION

Palliative and end-of-life care is not a new subject in the NICU. In the early years of neonatal medicine, palliative care or comfort care was the only option for many infants due to limited medical care. With continued advances in neonatology, infants and their families are faced with many other options and palliative care tends to become a “last resort.”

With a better understanding of how palliative care can be provided alongside life-extending care, the cumulative distress of an infant's life-limiting diagnosis can be eased in the infant, family, and in the NICU staff.10 As illustrated in Aaron's case, a NICU dedicated palliative care team, working alongside the interdisciplinary team, represents best practice when providing sustainable and successful palliative and end-of-life care to infants in the NICU.

Parent Perspective

“My experience as a parent from our son receiving palliative care has been amazing. Once we switched Aaron's plan to full palliative care, we were able to make sure he was comfortable and happy. It was important to us to always make sure Aaron's health and wellness came first. I can understand how some parents don't want to accept that their child is sick and may pass away in the hospital. But we always must look at the bigger picture, we have to make sure that we take care of our child's needs first. It was hard for us to really realize that our child's illness may never get better, and once we knew about palliative care and how it's more for his comfort, we were for it. Palliative care isn't something scary, it's to make the needs more towards the comfort of your child. I wouldn't have done anything else for Aaron, at the end he was happy, and he passed away peacefully. What the nurses and doctors did for us was amazing, we couldn't have asked for anything better.” —Aubrie (mother of Aaron)

The authors have written permission from Aaron's parents to use his photograph, name, diagnosis, and details about the care he received while a patient at CHCO.

Acknowledgments

The authors would like to acknowledge Dr Susan Niermeyer and Dr Clyde Wright for their unwavering support and contributions to Aaron's team and to this case report. The authors also wish to acknowledge the amazing teamwork of Aaron's multidisciplinary team, his incredible primary nursing team of 9, and Aaron's parents for continuing to share his story to help improve palliative care outcomes for other infants whose lives will be cut way too short.

References

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6. Baughcum AE, Fortney CA, Winning A, et al. Perspectives from bereaved parents on improving end of life care in the NICU. Clin Pract Pediatr Psychol. 2017;5(4):392–403.
7. Sepulveda C, Marlin A, Yoshida T, Ulrich A. Palliative care: the World Health Organization global perspective. J Pain Symptom Manage. 2002;24(2):91–96.
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Keywords:

end-of-life care; interdisciplinary; neonatal palliative care team; palliative care; pulmonary hypertension; pulmonary vein stenosis

© 2020 by the National Association of Neonatal Nurses.