Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents Annie Janvier, MD, PhD,a John Lantos, MD,b Judy Aschner, MD,c Keith Barrington, MB, ChB, a Beau Batton, MD, d Daniel Batton, MD, d Siri Fuglem Berg, MD, PhD,e Brian Carter, MD,b Deborah Campbell, MD, FAAP,c Felicia Cohn, PhD,f Anne Drapkin Lyerly, MD, MA,g Dan Ellsbury, MD, h Avroy Fanaroff, MD,i Jonathan Fanaroff, MD, JD,i Kristy Fanaroff, MSN, NNP,i Sophie Gravel, BNurs,a Marlyse Haward, MD,j Stefan Kutzsche, MD, PhD,k Neil Marlow, DM, FMedSci,l Martha Montello, PhD,m Nathalie Maitre, MD, PhD,n Joshua T. Morris, MDiv, BCC,o Odd G. Paulsen, MD, p Trisha Prentice, MBBS, q Alan R. Spitzer, MDh

For parents, the experience of having an infant in the NICU is often abstract psychologically traumatic. No parent can be fully prepared for the extreme stress and range of emotions of caring for a critically ill newborn. As health care providers familiar with the NICU, we thought that we understood a Department of Pediatrics, Hôpital Saint-Justine, Montréal, the impact of the NICU on parents. But we were not prepared to see the Quebec, Canada; bChildren’s Mercy Hospital, Kansas children in our own families as NICU patients. Here are some of the lessons City, Missouri; cAlbert Einstein College of Medicine, The Children’s Hospital at Montefi ore, New York, New York; our NICU experience has taught us. We offer these lessons in the hope of dDepartment of Pediatrics, Southern Illinois University helping health professionals consider a balanced view of the NICU’s impact School of Medicine, Springfi eld, Illinois; eMunicipality of Gjovik, and Innlandet Hospital Trust, Hamar, Norway; on families. fBioethics, Kaiser Permanente, Oakland, California; gCenter for Bioethics and Department of Social Medicine, University of North Carolina, Chapel Hill, North Carolina; hPediatrix Medical Group, Mednax, Inc, Sunrise, Florida; For parents, the experience of that positive transformations often jDivision of Neonatology, iDepartment of Pediatrics, Case having an infant in the NICU is often follow traumatic life-altering events. In Western Reserve University, Rainbow Babies and Children’s Hospital, Cleveland, Ohio; kInternational Medical University, psychologically traumatic. No parent the medical literature, these changes Kuala Lumpur, Malaysia; lUCL EGA Institute for Women’s can be fully prepared for the extreme are referred to as posttraumatic Health, University College London, London, United Kingdom; m stress and range of emotions of caring 2 Center for Bioethics, Harvard Medical School, Boston, growth. They have been reported Massachusetts; nDepartment of Pediatrics, Center for for a critically ill newborn. Many most frequently in adults: for example, Perinatal Research, Nationwide Children’s Hospital and studies have documented the anxiety, cancer survivors, trauma victims, Ohio State University, Columbus, Ohio; oPediatrics, Miller depression, insomnia, grief, and Children’s and Women’s Hospital Long Beach, Long Beach, HIV-infected individuals, and those California; pDepartment of Anesthesiology, Innlandet posttraumatic stress symptoms that with spinal cord injuries. Recent Hospital Trust, Hamar, Norway; and qPediatrics, Royal 1 parents experience. These studies investigations, however, have shown Children’s Hospital Melbourne, Parkville, Victoria, Australia are important because they help us to that posttraumatic growth also occurs Drs Janvier and Lantos helped to conceptualize understand, to empathize, and maybe for children and families after the the manuscript, reviewed drafts, and contributed even to discover ways to improve serious illness of a child.3 Many factors to the fi nal product; and Drs Aschner, Barrington, Beau, B. Batton, D. Batton, Fuglem, Berg, Carter, families’ experiences. However, such are associated with resilience, including studies are also incomplete and Campbell, Cohn, Drapkin, Lyerly, Ellsbury, socioeconomic status, the nature and A. Fanaroff, J. Fanaroff, Haward, Kutzsche, Maitre, tell only part of the story. Most are permanence of the health condition, Marlow, Montello, Paulsen, Prentice, and Spitzer, conducted in the first months or years patient/parent psychological state, Ms Fanaroff, Ms Gravel, and Mr Morris contributed after the NICU hospitalization, when to the design of the paper, the drafting of the and family/social/societal support. the infants and their parents are still manuscript, and the review of the manuscript. All Unfortunately, investigations relating fragile. They generally do not report authors approved the fi nal version. to positive family transformations after how parents’ feelings, perceptions, and DOI: 10.1542/peds.2016-0655 neonatal hospitalizations are scarce. coping mechanisms change over the Accepted for publication Jun 14, 2016 They have been described for parents years. of children with Down syndrome, A different set of studies, from other trisomy 18, trisomy 13, and cerebral To cite: Janvier A, Lantos J, Aschner J, et al. domains of medicine and pediatrics, palsy. 4 –6 However, positive effects Stronger and More Vulnerable: A Balanced View has investigated the longer term effects of the NICU experience can be found of the Impacts of the NICU Experience on Parents. Pediatrics. 2016;138(3):e20160655 of a critical illness. These studies show in abundance outside of the medical

Downloaded from www.aappublications.org/news at Univ of NC at Chapel Hill on August 15, 2019 PEDIATRICS Volume 138 , number 3 , September 2016 :e 20160655 SPECIAL ARTICLE literature, from first-person reports in parent of a dead child, others about on controlling the things that we can books, memoirs, and parental blogs. 7 – 9 being the parents of children with but recognize when there are things Clinicians and researchers must be lifelong disabilities. Our children that we cannot. We no longer plan and mindful that the negative impacts of have grown. Some are now 1 year predict what may happen with every the NICU experience are only 1 side of old; others are >30 years old. We are possible decision. Often, life does not the story. not the same people nor the same follow our predictions. As health care providers familiar providers we were before being parents in the NICU. For many, these with the NICU, we thought that we DECIDING WITH THE HEART understood the impact of the NICU on are a series of small transformations. We have experienced the limitations parents. But we were not prepared to All of us had to rebuild ourselves of informed consent, statistics, see the children in our own families after our challenging perinatal and probabilities, and predictions. We as NICU patients. We were not ready NICU experiences that, to some know that being informed repeatedly for the ways in which the medical degree, destroyed who we were. that something bad may happen to jargon could be alienating to us when We share our perspective of a X% of infants does not help much; used to describe “our” infants. 8 We life transformation rather than a parents do not have 100 infants. We were not ready for the lack of control “posttraumatic growth.” We did have gained a new appreciation of that accompanies a typical NICU stay. not grow. We are stronger and yet uncertainty, of the role of emotions Even if we are highly rational and more vulnerable. Families’ reports of in decision-making. We know that organized individuals as providers, positive transformations outside of vulnerability and emotions are as parents we often gave consent for the medical literature resonate with sources of strength. They allow us interventions with our hearts, not our experiences. All families have to connect with our passion and our heads. 10 We had trouble when unique and different experiences, but purpose, to become happier, more health care professionals attempted many will learn similar lessons. compassionate, and more hopeful as to be honest with us and to help us human beings and as providers. develop realistic expectations about the future. Neonatal intensive care GRATITUDE providers were often perceived as Gratitude for the gift of life, for CONNECTEDNESS negative and pessimistic, especially simple and important things in In whole new ways, we have come at times when we needed hope. We life. Gratitude for our families and to understand the importance of came to a new appreciation regarding friends, for skilled professionals, family and relationships and the need the delicate balance that health for the kindnesses of strangers. We to nurture precious connections. In care providers must seek between understand every day, with our the most difficult moments in life, honesty and compassion, between hearts, that we have much to be some people held us while others realism and optimism. grateful for. disappeared. The NICU experience The experience of having an infant reminds us how important it is to be in the NICU altered both our there for those who matter in our lives. professional and our personal lives in PERSPECTIVE profound and permanent ways. We Learning to not sweat the small RESILIENCE had to slowly reinvent ourselves to stuff and to recognize what is truly be a new parent with a fragile infant, precious. We now pay less attention We learned that we are stronger than instead of the healthy infant that we to things that are not worth fussing we think. We now know it is possible had hoped for and dreamed about. over and fight like hell for the things to see our hopes, dreams, and plans totally destroyed and then to rewrite Here are some of the lessons our that are. We now see that perfection our story with a new plotline. We can NICU experience has taught us. We is in many places where we could adapt. We can experience a “freedom offer them in the hope of helping not see it before. Perfection does not from fear” when dealing with life health professionals consider a necessarily equate with percentages, challenges or with the imperfections balanced view of the NICU’s impact excellence, performance, high grades, of the health care system. We rarely on families. Despite sharing similar beauty, speed, or quantity. look backward and regret. experiences in our professional lives, our perinatal and NICU experiences were different. We all rewrote our LACK OF CONTROL HUMILITY life stories to include parts we were One of the most difficult things for a not prepared for; some of us had parent to recognize is that many things We are more humble about the to write a chapter about being the are beyond our control. We now focus powers of science. As providers,

Downloaded from www.aappublications.org/news at Univ of NC at Chapel Hill on August 15, 2019 2 JANVIER et al we had thought about what we impacts after an NICU experience. their own strength and resilience would do as parents if tragic things Researchers examining these will lead to “life transformations” happened to our children. We were outcomes should investigate that allow the world to make sense convinced we knew what we would both sides of the story. again and their families to rebuild do. However, faced with reality, Communications with parents themselves and write a new story. we often did not act in ways we should be balanced. thought we would: more important 2. Remain humble. Avoid sentences thoughts came through our heads, such as: “Parents don’t MORE ON THE POST GROUP AUTHORS more important values we did understand” or “If I were in their (IN ALPHABETICAL ORDER) AND THEIR not predict. We now have a much situation, I would not….” Too “NICU CHILDREN” greater respect for how to act in often, it is providers who do not Judy Aschner (neonatologist) is the unexpected scenarios, in situations of understand. mother of Nadav, who was born at 31 uncertainty. We are more flexible. 3. Tell parents that they did not weeks after rupture of membranes at choose the misfortunes that are 21 weeks’ gestational age (GA). FORGIVENESS happening to their infant, that Beau Batton (neonatologist) is Having a sick infant is often there is nothing they could have the father, and Daniel Batton associated with parental guilt or done to prevent this. Remind them (neonatologist) is the grandfather, grief. The ability to “move on” often that their infant is lucky to of Charlie, who was born with a not only takes time but requires have parents who love him or her. univentricular heart. forgiveness. Forgiveness to ourselves, 4. Let parents know that positive Siri F. Berg (anesthesiologist) and for what we perhaps could have, transformations are possible. Odd G. Paulsen (anesthesiologist and should have, done or been. For those 5. Temper discussions about risks emergency physician) are the parents of us whose child dies, we must with words about something good of Evy Kristine, who was born with forgive ourselves when, in time, we happening, such as resilience, love, trisomy 18 and died of cardiac realize that life goes on. Forgiveness and the chances of healing. failure. for those who disappeared when we needed them, for real and perceived 6. Help parents prioritize their Deborah Campbell (neonatologist) human failings of our families or energy and how to recognize is the mother of Courtney Alexis, friends or providers. We have what they can and cannot control. born at 27 weeks during a pregnancy learned that forgiveness is a journey Encourage them to let go where complicated by preeclampsia and and apply that understanding to they can. massive abruption. Courtney died at 28 days of age. other spheres of our lives. 7. Inform parents that life will not always be like this, that the roller Brian Carter (neonatologist, palliative care physician, and clinical ethicist) DEDICATION coaster will become a train with a known destination. That one is the father of Sean, who was born at We are more dedicated to excellence day, it will be better. That they 34 weeks’ GA. in clinical care. We witnessed the are stronger than they think. That Felicia Cohn (clinical ethicist) is pure beauty of bedside clinical they have to believe it. the mother of Amanda, who was excellence, which we sometimes born with transposition of the great found in unexpected places and with 8. We can be there for parents at vessels. all types of health care providers. We tough moments or avoid them. learned the power of small gestures, Be there. Dan Ellsbury (neonatologist) is the the deep impact of an extra effort, a These lessons do not in any way father of Codey, Kyle, and Hope. genuine smile, or a kind word. We attempt to sugarcoat or diminish the Codey and Kyle were born at 28 also met some less competent people. difficult and bitter reality of having weeks’ GA. Kyle died of complications We are now intolerant of mediocrity an infant in the NICU. However, of prematurity and Beckwith- and uncompromising with regard to parental NICU experiences may be Wiedemann syndrome. Hope was patient care. improved by balancing the cold, born with hypoplastic left heart hard facts, bleak outcomes, and syndrome. psychological toll with the insights Jonathan Fanaroff (neonatologist RECOMMENDATIONS TO CLINICIANS we offer. Most parents are resilient. and bioethicist) and Kristy Fanaroff AND RESEARCHERS They advocate for their child in ways (neonatal nurse practitioner) are 1. Be aware that parents experience they cannot or would not advocate the parents of Mason, who was born both negative and positive for themselves. The realization of at 32 weeks’ GA. Avroy Fanaroff

Downloaded from www.aappublications.org/news at Univ of NC at Chapel Hill on August 15, 2019 PEDIATRICS Volume 138 , number 3 , September 2016 3 (neonatologist) is the grandfather of Jakob and Vegard, twins who were Joshua T. Morris (pediatric of Mason and the father of Jonathan, born at 25 weeks’ GA. hospital chaplain) is the father of who was critically ill at birth with John Lantos (pediatrician and Isaac, who was born at meconium aspiration syndrome. clinical ethicist) and Martha 28 weeks’ GA. Sophie Gravel (chief NICU nurse) Montello (clinical ethicist) are the Trisha Prentice (neonatologist and is the mother of Roxanne, who was grandparents of Sam and Will, who doctoral candidate) is the mother born with in utero volvulus at 29 were born at 23 weeks’ GA. Sam died of Jordain, who was born at weeks. of complications of prematurity. 28 weeks’ GA. Marlyse Haward (neonatologist and Anne Drapkin Lyerly (obstetrician Alan R. Spitzer (neonatologist and bioethicist) is the mother of Charlie, and bioethicist) is the mother of Will, researcher) is the grandfather of who was diagnosed in utero with who was born at term with an intra- Jacob, Matthew, Alexandra, and congenital anomalies. He is now abdominal mass. Shaun, born at 29, 36, 35, and 35 doing well. Nathalie Maitre (neonatologist, weeks’ GA, respectively. Annie Janvier (neonatologist and follow-up physician, and researcher) clinical ethicist) and Keith Barrington is the mother of Leo, who was born (neonatologist) are the parents of at 27 weeks’ GA, and Lucas, who was ABBREVIATION Violette, who was born at 24 weeks’ born at 36 weeks’ GA. GA: gestational age GA. Neil Marlow (neonatologist) is the Stefan Kutzsche (neonatologist and father of Tom and Simon, who were anesthesiologist) is the grandfather born at 30 weeks’ GA.

Address correspondence to John D. Lantos, MD, Children’s Mercy Hospital, 2401 Gillham Rd, Kansas City, MO 64108. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2016 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The authors have indicated they have no fi nancial relationships relevant to this article to disclose. FUNDING: No external funding. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential confl icts of interest to disclose.

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Downloaded from www.aappublications.org/news at Univ of NC at Chapel Hill on August 15, 2019 4 JANVIER et al Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents Annie Janvier, John Lantos, Judy Aschner, Keith Barrington, Beau Batton, Daniel Batton, Siri Fuglem Berg, Brian Carter, Deborah Campbell, Felicia Cohn, Anne Drapkin Lyerly, Dan Ellsbury, Avroy Fanaroff, Jonathan Fanaroff, Kristy Fanaroff, Sophie Gravel, Marlyse Haward, Stefan Kutzsche, Neil Marlow, Martha Montello, Nathalie Maitre, Joshua T. Morris, Odd G. Paulsen, Trisha Prentice and Alan R. Spitzer Pediatrics 2016;138; DOI: 10.1542/peds.2016-0655 originally published online August 3, 2016;

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Downloaded from www.aappublications.org/news at Univ of NC at Chapel Hill on August 15, 2019 Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents Annie Janvier, John Lantos, Judy Aschner, Keith Barrington, Beau Batton, Daniel Batton, Siri Fuglem Berg, Brian Carter, Deborah Campbell, Felicia Cohn, Anne Drapkin Lyerly, Dan Ellsbury, Avroy Fanaroff, Jonathan Fanaroff, Kristy Fanaroff, Sophie Gravel, Marlyse Haward, Stefan Kutzsche, Neil Marlow, Martha Montello, Nathalie Maitre, Joshua T. Morris, Odd G. Paulsen, Trisha Prentice and Alan R. Spitzer Pediatrics 2016;138; DOI: 10.1542/peds.2016-0655 originally published online August 3, 2016;

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