Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome
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Infant With Trisomy 18 and
Hypoplastic Left Heart Syndrome
Stephanie Kukora, MD,a,b Janice Firn, PhD,a,c Naomi Laventhal, MD,a,b Christian Vercler, MD,a,d Bryanna Moore, PhD,e
John D. Lantos, MDe
We present a case in which a fetal diagnosis of complex congenital heart abstract
disease and trisomy 18 led to a series of decisions for an infant who was
critically ill. The parents wanted everything done. The surgeons believed that
surgery would be futile. The parents publicized the case on social media,
which led to publicity and pressure on the hospital. The case reveals the
intersection of parental values, clinical judgments, ethics consultation,
insurance company decisions about reimbursement, and social media
publicity. Together, these factors complicate the already delicate ethical
deliberations and decisions.
a
Center for Bioethics and Social Sciences in Medicine,
b
Division of Neonatal-Perinatal Medicine, Department of
Some dramatic cases force doctors to at which his condition was diagnosed Pediatrics, cDivision of Professional Education, Department
reevaluate long-held ethical norms and did not offer surgical intervention for of Learning Health Sciences, and dDepartment of Surgery,
University of Michigan, Ann Arbor, Michigan; and eChildren’s
ingrained patterns of practice. More infants with trisomy 18. They Mercy Bioethics Center, Children’s Mercy Hospital, Kansas
commonly, however, ethical norms shift transferred to a different hospital that City, Missouri
gradually and almost unnoticeably over was willing to offer cardiac surgery. At
Drs Kukora, Firn, Laventhal, Vercler, Moore, and
time. Such slow shifts are usually the the second hospital, a prenatal Lantos contributed to the design of this article, the
result of a combination of factors, ultrasound at 36 weeks’ gestation drafting of the manuscript, and the review of the
including advances in medical revealed that the infant now had an manuscript and approved the final manuscript as
technology and changes in social unbalanced atrioventricular septal submitted.
attitudes. In this ethics rounds, we defect with hypoplastic left heart DOI: https://doi.org/10.1542/peds.2018-3779
present a case in which a fetal diagnosis syndrome. The doctors then explained Accepted for publication Dec 3, 2018
led to a series of decisions for an infant to the parents that, because of the Address correspondence to Stephanie Kukora, MD,
who was critically ill with trisomy 18 trisomy, they would not offer surgery. Division of Neonatal-Perinatal Medicine, Department
and congenital heart disease. The case of Pediatrics, C.S. Mott Children’s Hospital, University
reveals the intersection of parental The parents requested that all possible of Michigan Medical Center, 8-621 C&W Mott Hospital,
values, clinical judgments, ethics life-sustaining therapies be provided. 1540 E Hospital Dr, SPC 4254, Ann Arbor, MI 48109-
Thus, after delivery, a prostaglandin 4254. E-mail: skukora@med.umich.edu
consultation, insurance company
decisions about reimbursement, and infusion was started, and the infant was PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online,
social media publicity. Together, these stabilized, first with continuous 1098-4275).
factors led to complex ethical positive airway pressure and then with Copyright © 2019 by the American Academy of
intubation and mechanical ventilation. Pediatrics
deliberations and decisions.
An echocardiogram confirmed the FINANCIAL DISCLOSURE: The authors have indicated
prenatal diagnosis, and the they have no financial relationships relevant to this
article to disclose.
cardiothoracic surgeons told the
THE CASE parents that surgery was not an option. FUNDING: No external funding.
An infant born at 37 weeks' gestation Instead, they recommended comfort POTENTIAL CONFLICT OF INTEREST: The authors have
had been antenatally diagnosed with care only. The parents declined comfort indicated they have no potential conflicts of interest
to disclose.
trisomy 18. His ultrasound, done at at care. Over subsequent weeks,
22 weeks’ gestation, had also shown worsening heart failure developed.
a well-balanced atrioventricular septal Enteral feeding was not provided To cite: Kukora S, Firn J, Laventhal N, et al. Infant
With Trisomy 18 and Hypoplastic Left Heart
defect and a normal aortic arch. His because of risk of intestinal injury with
Syndrome. Pediatrics. 2019;143(5):e20183779
parents were informed that the hospital ductal-dependent systemic blood flow;
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PEDIATRICS Volume 143, number 5, May 2019:e20183779 ETHICS ROUNDSthe infant was maintained on result of both the medical condition patient’s condition and consideration
intravenous nutrition. The palliative and a self-fulfilling prophecy. When of the parents’ goals and values.
care team arranged for the infant to infants with this condition are not
be discharged from the hospital on offered life support, most die. But if Shared decision-making entails that
prostaglandin. offered life support, survival rates parents and physicians should
increase.4 Authors of several studies collaboratively choose between
Throughout the hospitalization, the ethically permissible options on the
of infants with trisomy 13 and 18
parents continued to reiterate their basis of parents’ values and available
noted 1-year survival rates ranging
desire for all life-sustaining therapies, medical information.24–26 Values
from 8% to 25%.5–7 Ten percent
including surgery. They described provide a context in which an
survive .10 years.8 Surgical
their situation on Facebook, leading outcome can be framed as good or
outcomes for infants with trisomy
to public attention in both traditional bad.27
and congenital heart disease have
and digital media. When the infant
improved.9–11
was at 2 weeks of life, another Parents’ and doctors’ values shape
medical center was identified that Over the last 20 years, more children their perceptions of different
offered the first stage of surgical with these conditions are treated and outcomes. When survival is
palliation. The parents faced a choice: survive.12–14 Even so, the majority improbable or impossible, outcomes
(1) accept the risks of surgery and of these children still die within the such as having more time with their
travel far from home, knowing that first year of life. All have severe living child, avoiding suffering, having
success was unlikely but that they cognitive and developmental an opportunity to hold, staying
had tried everything, or (2) take the impairment. Many have anatomic hopeful or faithful, or being a good
infant home for hospice care. The anomalies. Authors of existing cohort parent may determine their choices.
parents opted for transfer and studies may report the outcomes of The same event, such as a child dying
surgery. However, their insurance only a subset who received on the operating table during surgery,
company declined coverage for a particular therapy; for example, may be perceived by parents as
transport, surgery, and postoperative studies in which the authors better than having their child die
care. An ethics consultation was evaluated surgical outcomes for while receiving comfort care.
requested. trisomy 18 may be influenced by Surgeons might perceive that same
infants who were the sickest dying outcome as the worst possible one.
Stephanie Kukora, MD, and Naomi before surgery or being excluded for
Laventhal, MD, Comment poor surgical candidacy. Likewise, Many professionals have negative
Trisomy 18 is an incurable, life- treatments these patients receive at attitudes toward infants anticipated
limiting condition, characterized by birth vary widely, which almost to have severe impairment. Medical
1 or multiple anomalies, including certainly influences length of literature has been focused on the
dysmorphic appearance, kidney survival.15 Thus, it is difficult to know high morbidity and mortality of these
malformations, structural heart how to counsel parents when they conditions and the degree of
defects, abnormalities of the have an infant with a trisomy and impairment typical for the
gastrointestinal tract, intellectual and other significant anomalies. population, with concomitant
developmental disabilities, poor emphasis on the invasive, painful, or
Despite the challenges of clearly undignified aspects of early intensive
feeding and growth, and abnormal
characterizing the epidemiological care. Physicians rarely see these
breathing patterns or apnea. Trisomy
outcomes of this population, the children in happy families. Parents of
18 affects 1 in 5000 newborns.1 It has
increased survival has sparked these patients, by contrast, report
a higher prevalence on antenatal
debate among ethicists regarding that their children have a good quality
diagnosis than among live births
what options should be available to of life.28
because of intrauterine fetal demise
these infants, how we should weigh
and elective pregnancy termination.2
risks and benefits of these therapies,
Until recently, doctors thought that and who should make these Christian Vercler, MD, Comments
all infants with trisomy 18 would decisions.2,15–23 This debate has led The decision by a surgeon that
die during infancy. In 1996, these to relative consensus that a shared a patient is not a candidate for an
patients were reported to have decision-making approach between operative intervention places
a median survival of 3 days, with no physicians and parents should be a definitive limit on parental choice.
survival at 1 year.1 Today, however, employed for these decisions. We Surgeons are uniquely empowered to
we know that many infants with this should avoid hard and fast rules and, make such refusals. Intensivists feel
condition can survive for years.3 instead, individualize decisions on the less empowered to say “no” to
Universal mortality was, it seems, the basis of both the specifics of each parents.29 In this case, many surgeons
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2 KUKORA et alrefused to operate, but one was themselves personally accountable and believe that [he is] going to defy
apparently willing. if a patient has a bad outcome.31 the odds and that he will live for
Parental permission does not a long time with us.”32 At the same
When a surgeon states that a patient legitimize an operation that cannot time, they were grateful for every day
is “not a surgical candidate,” the achieve an intended goal. that he was alive and wanted as many
surgeon is making a judgment that such days as possible, noting, “As I
balances facts and values and In this case, there was no
begin this day I’m thankful for
includes concepts that may be opaque disagreement about the fact that the
another day with [him]. Thankful
to the nonsurgeon. It may be that the operation would not be able to achieve
he’s so peaceful and comfortable.
proposed operation is anatomically its intended goal. The goal of the
Thankful he’s so awake and
impossible. It may be that, first stage of the 3-stage palliation of
responsive to my voice. I love this
physiologically, the operation will not hypoplastic left heart syndrome is
baby more than anyone can
make the person better. It may be that only to prepare the cardiopulmonary
imagine.”33
the surgeon herself does not feel anatomy and physiology for the
confident that she can bring the second- and third-stage operations. His parents believed that their values
patient safely through the operation. Even the surgeon who was willing to should prevail over those of most
The surgeon may feel that the goal of do the first-stage procedure believed doctors. His mother said, “I do a lot of
the operation is inappropriate or that this child would not survive to praying and talking to the doctors
unachievable. Because the factors undergo the second or third stage. The and the nurses and hoping that
that influence this decision are not issue, thus, was whether the goal of somehow we can change their
necessarily clear to all involved performing the operation to allow the mind.… I’m hoping that it is possible.
parties, such a decision can trigger parents to say that they had “done I’d like to take my son home”34 and
concerns that the decision is everything” is a legitimate goal. “It’s a very risky surgery. But we have
motivated by judgments about the someone…that is actually willing to
quality of life rather than the chance Janice Firn, PhD, Comments do the surgery and wants to get [him]
of surgical success. After the decision was made that the there now.”34
patient was not a surgical candidate,
The statement that a patient is “not The Ethics Committee Decision
the parents requested ethics
a surgical candidate” is
consultation. In the conversation with After reviewing the cardiac surgeons’
a performative utterance. The
the ethics consultation team, the decision to not offer surgery, the
statement changes the circumstances
parents expressed concern that the ethics committee determined that it
of the person it describes. Other
decision not to offer surgery was was made on the basis of the medical
examples of performative utterances
based on the surgeons’ personal bias condition of the patient and was not
are when a police officer says, “You
toward persons with trisomy 18 the result of bias regarding trisomy
are under arrest” or when a priest
rather than on medical reasoning. 18. They felt that any child with
declares, “I pronounce you husband
and wife.” In this case, the similar medical status, even in the
In the discussion with the ethics
determination that the patient was absence of trisomy 18, would be
service, the parents identified the
not a surgical candidate led the denied surgery. The ethics committee
following goals for their son and their
insurance company to refuse to fund felt that the cardiac surgeons’
family: (1) do everything to have their
the operation. decision was ethically permissible.
son live at home; (2) pursue all
They wrote, “When an intervention
available therapies to prolong their
That surgeons are granted the portends disproportionate burdens
son’s life, including cardiac surgery,
authority to decide when an relative to the intended outcome,
even if that means transferring to
operation will or will not be physicians are under no obligation to
another facility for the surgery; and
performed reflects recognition of the initiate treatment, even if requested
(3) be close to their social support
skill and judgment exercised in by parents.” The ethics committee
network and their other children.
deciding whether the benefits of referred to and relied on the
operating on a patient outweigh the They believed that he could beat the institution’s nonbeneficial treatment
risks of anesthesia and surgery. odds. They were quoted as saying, policy in its recommendations.
Surgeons spend tens of thousands “[We’re hoping] that [he] is able to Consistent with the official policy
of hours learning to make these grow and come home with us and statement of the American Thoracic
decisions. The prudence required we’re able to grow and interact with Society,35 the institutional policy
in surgical decision-making is our kids, our family, our friends – just states that when a medical
inseparable from the performance watch him grow at a place other than intervention is deemed to be
of the operation.30 Surgeons hold in the hospital.… We absolutely hope medically futile, physicians are under
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PEDIATRICS Volume 143, number 5, May 2019 3no obligation to initiate or continue for the Children’s Special Health Care committed providers are to a given
such treatment, even if requested Fund to cover costs. recommendation.
by the patient or the patient’s family
Digital media had an effect on this
or representative(s). An intervention Bryanna Moore, PhD, Comments infant’s journey. It enabled his story
is considered futile when it satisfies
This case did not reach the level of to spread. If this story had not been
all of the following conditions: (1) the
national news, but what if it had? picked up by the press, a third
patient’s condition is terminal and
What if the family’s Facebook page hospital may never have stepped in
incurable, (2) the intervention is not
had attracted hundreds of thousands and offered palliative surgery. The
required for relieving the patient’s
of followers, or what if they had relatively mundane act of people
discomfort, and (3) the intervention
raised millions of dollars? What if the clicking the “like” and “share” buttons
offers no reasonable medical benefit
President had decided to tweet about shaped this infant’s short life and
to the patient and serves only to
this story? Turning to digital media forever changed this family’s story.
postpone the moment of death.36
can seem like the best or only way for Clinicians and health administrators
Nevertheless, the ethics committee frustrated parents to advocate for must be prepared for the ways that
also supported the parents’ right to their child. It does not always work, private conversations and decisions
transfer their child to another but it changes the debate from may quickly be subject to public
institution. They wrote, “When a private and personal one to a public scrutiny and judgment in the court of
differences in perception of benefits one, sometimes with unintended public opinion.
and risks between parents and consequences.
medical teams occur, after careful Case Resolution
deliberation and conversation to Once digital media get involved, if When the patient was 5 weeks old,
ensure consistency in comprehension things go viral, relatively private the insurance company changed its
and underlying facts, parents should disagreements about futile treatment decision and approved payment for
be given the opportunity to secure can be coopted by third parties for transfer and treatment. The patient
the services of another physician or personal and political purposes. This was transferred with an agreement
hospital and be supported in their case could easily have transformed that he could only return to the
efforts to do so.” This, too, was based from a discussion about what was referring hospital for care when he
on the American Thoracic Society best for the infant to one about had completed postoperative
recommendation that, when there is whether doctors were biased against recovery with only controlled and/or
intractable conflict, teams should infants with disabilities or about mild heart failure. After transfer, the
offer the option to transfer care to whether health care organizations patient’s mother remained at his side,
another institution if an accepting abuse their power. Such discussions away from her home, job, and 3 other
institution can be identified. may or may not have furthered the children, who were cared for by
parents’ goal of getting surgery for their father. He underwent surgery
Media and Social Media Involvement their infant. at 8 weeks of age. Postoperatively,
The case garnered media attention. his cardiac status worsened. After
Clearly, the voices of digital media are
The patient’s Facebook page, created 6 weeks of intensive postoperative
not necessarily voices of respectable
by his mother, was followed by tens of support, his parents and care team
moral authority or reason in such
thousands of people.37,38 Multiple reached consensus that there was no
debates. But they are powerful.
news stations were following the chance of survival. His parents
Clinicians and ethicists involved in
story as well as several advocacy requested that he return to the initial
these cases might ask themselves:
groups. A friend of the family created center for end-of-life care, but he was
Would our reasons for refusing
a GoFundMe page, which was shared too unstable for transfer and died at
a parental request stand up to mass
.2800 times and raised .27 000 14 weeks of age after transition to
publicity? Would we be comfortable if
dollars. comfort care.
50 000 people knew what we said to
Partly as a result of the publicity, a family behind closed doors? The After he died, his mother stated, “I’d
another institution was identified that test of public scrutiny can lead to do it all over again.…I had three
would accept the patient in transfer. more accountability. Interventions wonderful months with a sweet little
When the parents’ insurance should never be offered solely as boy.…The heart surgery was
company declined to cover the a result of mounting media or public successful. It was other complications
costs, a stranger donated 39 000 pressure. But, in situations of clinical with his other organs.…If we’d have
dollars to pay for the transfer to the and ethical uncertainty, a test of taken him home without it we might
accepting institution.39 The family public scrutiny may be an ethically have gotten a day.… I think he was
was also able to apply and qualify appropriate way to check how given to us for a reason. Special
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4 KUKORA et alchildren are given to the strongest 4. Wilkinson D. The self-fulfilling prophecy American Heart Association guidelines
parents and I think he was given to us in intensive care. Theor Med Bioeth. update for cardiopulmonary
for a purpose.”37 2009;30(6):401–410 resuscitation and emergency
5. Kosho T, Nakamura T, Kawame H, Baba cardiovascular care. Circulation. 2015;
A, Tamura M, Fukushima Y. Neonatal 132(18, suppl 2):S543–S560
John D. Lantos, MD, Comments
management of trisomy 18: clinical 15. Derrington SF, Dworetz AR. Confronting
Conflicts about medical futility have details of 24 patients receiving ambiguity: identifying options for
troubled patients, parents, intensive treatment. Am J Med Genet A. infants with trisomy 18. J Clin Ethics.
professionals, judges and policy 2006;140(9):937–944 2011;22(4):338–344; author reply
makers for decades.40 In recent years, 358–362
6. Wu J, Springett A, Morris JK. Survival of
parents’ ability to publicize such trisomy 18 (Edwards syndrome) and 16. Janvier A, Watkins A. Medical
cases using social media has made the trisomy 13 (Patau syndrome) in interventions for children with trisomy
controversies even more England and Wales: 2004-2011. Am 13 and trisomy 18: what is the value of
complicated.41 This case illustrates J Med Genet A. 2013;161A(10): a short disabled life? Acta Paediatr.
the fundamental issue in such cases. 2512–2518 2013;102(12):1112–1117
Treatment of this infant clearly 7. Nelson KE, Hexem KR, Feudtner C. 17. Carey JC. Perspectives on the care and
prolonged his life. Without intubation, Inpatient hospital care of children with management of infants with trisomy 18
mechanical ventilation, parenteral trisomy 13 and trisomy 18 in the United and trisomy 13: striving for balance.
nutrition, and prostaglandin, he States. Pediatrics. 2012;129(5):869–876 Curr Opin Pediatr. 2012;24(6):672–678
would have died within days. Instead, 8. Nelson KE, Rosella LC, Mahant S, 18. Bruns DA. Neonatal experiences of
he lived 14 weeks. His mother Guttmann A. Survival and surgical newborns with full trisomy 18. Adv
thought that the efforts to save his life interventions for children with trisomy Neonatal Care. 2010;10(1):25–31
were ethically appropriate and that 13 and 18. JAMA. 2016;316(4):420–428
19. Janvier A, Farlow B, Barrington K.
his life had a purpose. At least one 9. Maeda J, Yamagishi H, Furutani Y, et al. Cardiac surgery for children with
doctor was willing to offer surgery. The impact of cardiac surgery in trisomies 13 and 18: where are we
Many doctors and policy makers patients with trisomy 18 and trisomy 13 now? Semin Perinatol. 2016;40(4):
might disagree and argue that we in Japan. Am J Med Genet A. 2011; 254–260
only prolonged the infant’s dying 155A(11):2641–2646
20. Wilkinson DJ. Antenatal diagnosis of
process and subjected him to 10. Graham EM, Bradley SM, Shirali GS, trisomy 18, harm and parental choice.
numerous painful procedures at great Hills CB, Atz AM; Pediatric Cardiac Care J Med Ethics. 2010;36(11):644–645
expense when the outcome was Consortium. Effectiveness of cardiac
21. McGraw MP, Perlman JM. Attitudes of
clearly foreseeable. In the United surgery in trisomies 13 and 18 (from
neonatologists toward delivery room
States today, however, both the court the Pediatric Cardiac Care Consortium).
management of confirmed trisomy 18:
of public opinion and, in most cases, Am J Cardiol. 2004;93(6):801–803
potential factors influencing a changing
the judiciary would side with the 11. Kaneko Y, Kobayashi J, Yamamoto Y, dynamic. Pediatrics. 2008;121(6):
parents. In doing so, they affirm the et al. Intensive cardiac management in 1106–1110
value of each life, no matter how patients with trisomy 13 or trisomy 18.
22. Koogler TK, Wilfond BS, Ross LF. Lethal
short or diminished by illness that life Am J Med Genet A. 2008;146A(11):
language, lethal decisions. Hastings
might be. That is a difficult value to 1372–1380
Cent Rep. 2003;33(2):37–41
oppose. 12. Janvier A, Farlow B, Barrington KJ.
23. Acharya K, Leuthner S, Clark R, Nghiem-
Parental hopes, interventions, and
Rao TH, Spitzer A, Lagatta J. Major
survival of neonates with trisomy 13
REFERENCES anomalies and birth-weight influence
and trisomy 18. Am J Med Genet C
1. Embleton ND, Wyllie JP, Wright MJ, Burn NICU interventions and mortality in
Semin Med Genet. 2016;172(3 suppl 24):
J, Hunter S. Natural history of trisomy infants with trisomy 13 or 18.
279–287
18. Arch Dis Child Fetal Neonatal Ed. J Perinatol. 2017;37(4):420–426
13. Kattwinkel J, Perlman JM, Aziz K, et al.
1996;75(1):F38–F41 24. Charles C, Gafni A, Whelan T. Shared
Part 15: neonatal resuscitation: 2010
2. Merritt TA, Catlin A, Wool C, Peverini R, decision-making in the medical
American Heart Association guidelines
Goldstein M, Oshiro B. Trisomy 18 and encounter: what does it mean? (or it
for cardiopulmonary resuscitation and
trisomy 13. Neoreviews. 2012;13(1): takes at least two to tango). Soc Sci
emergency cardiovascular care
e40–e48 Med. 1997;44(5):681–692
[published correction appears in
3. Pyle AK, Fleischman AR, Hardart G, Circulation. 2011;124(15):e406]. 25. Emanuel EJ, Emanuel LL. Four models of
Mercurio MR. Management options and Circulation. 2010;122(18, suppl 3): the physician-patient relationship.
S909–S919 JAMA. 1992;267(16):2221–2226
parental voice in the treatment of
trisomy 13 and 18. J Perinatol. 2018; 14. Wyckoff MH, Aziz K, Escobedo MB, et al. 26. Kukora SK, Boss RD. Values-based
38(9):1135–1143 Part 13: neonatal resuscitation: 2015 shared decision-making in the
Downloaded from www.aappublications.org/news by guest on August 17, 2021
PEDIATRICS Volume 143, number 5, May 2019 5antenatal period. Semin Fetal Neonatal 33. Flanders N. Baby with trisomy 18 wl_and_withholding_care.pdf.
Med. 2018;23(1):17–24 denied life-saving surgery by insurance Accessed February 27, 2019
27. Rokeach M. The Nature of Human company. 2016. Available at: https://
37. Trujillo D. Mom who fought for her son
Values. New York, NY: The Free Press; www.liveaction.org/news/baby-with-
remembers Jonah’s journey. 2016.
1973 trisomy-18-denied-life-saving-surgery-
Available at: http://krqe.com/2016/08/
by-insurance-company/. Accessed July
28. Janvier A, Farlow B, Wilfond BS. The 14/mom-who-fought-for-her-son-
6, 2018
experience of families with children remembers-jonahs-journey/. Accessed
with trisomy 13 and 18 in social 34. Ferguson C. Kentwood couple battles July 6, 2018
networks. Pediatrics. 2012;130(2): insurance company for baby’s survival.
38. Clark J. Michigan couple battling
293–298 2016. Available at: http://woodtv.com/
insurance company for baby’s survival.
29. Wicclair MR, White DB. Surgeons, 2016/05/17/kentwood-couple-battles-
2016. Available at: http://wcrz.com/
intensivists, and discretion to refuse insurance-company-for-babys-survival/.
michigan-couple-battling-insurance-
requested treatments. Hastings Cent Accessed July 6, 2018
company-for-babys-survival-video/.
Rep. 2014;44(5):33–42 35. Hayes MM, Turnbull AE, Zaeh S, et al. Accessed July 6, 2018
30. Vercler CJ. Surgical ethics: surgical Responding to requests for potentially
39. VanGilder R. $39K donation to send
virtue and more. Narrat Inq Bioeth. inappropriate treatments in intensive
baby to Ohio for surgery. Available at:
2015;5(1):45–51 care units. Ann Am Thorac Soc. 2015;
http://woodtv.com/2016/05/18/39k-
31. Bosk CL. Forgive and Remember: 12(11):1697–1699
donation-to-send-baby-to-ohio-for-
Managing Medical Failure. 2nd ed. 36. Firn J, Marks A, Vercler C, Shuman A, surgery/. Accessed July 6, 2018
Chicago, IL: University of Chicago Press; Goldman E, Kamil LH. UMHHC Policy 03-
2003 40. Lantos J. Intractable disagreements
07-009 Withdrawal and Withholding of
about futility. Perspect Biol Med. 2018;
32. VanGilder R. Jonah’s journey takes baby Medical Treatments (Non-Beneficial
60(3):390–399
and mom to Ohio. 2016. Available at: Treatment/Intervention). Ann Arbor, MI:
http://woodtv.com/2016/06/11/jonahs- Michigan Medicine; 2016. Available at: 41. Lantos JD. The tragic case of Charlie
journey-takes-baby-and-mom-to-ohio/. http://cbssm.med.umich.edu/sites/ Gard. JAMA Pediatr. 2017;171(10):
Accessed July 6, 2018 cbssm/files/umhhc_policy_03withdra 935–936
Downloaded from www.aappublications.org/news by guest on August 17, 2021
6 KUKORA et alInfant With Trisomy 18 and Hypoplastic Left Heart Syndrome
Stephanie Kukora, Janice Firn, Naomi Laventhal, Christian Vercler, Bryanna Moore
and John D. Lantos
Pediatrics 2019;143;
DOI: 10.1542/peds.2018-3779 originally published online April 4, 2019;
Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/143/5/e20183779
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Downloaded from www.aappublications.org/news by guest on August 17, 2021Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome
Stephanie Kukora, Janice Firn, Naomi Laventhal, Christian Vercler, Bryanna Moore
and John D. Lantos
Pediatrics 2019;143;
DOI: 10.1542/peds.2018-3779 originally published online April 4, 2019;
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/143/5/e20183779
Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
has been published continuously since 1948. Pediatrics is owned, published, and trademarked by
the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2019
by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.
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