Effectiveness of cardiac surgery in patients with trisomy 18: a single-institutional experience

Nakai, Yosuke; Asano, Masahisa; Nomura, Norikazu; Matsumae, Hidekazu; Mishima, Akira

doi:10.1017/s1047951115002723

Cited by 18 publications

(23 citation statements)

References 22 publications

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“…Medical care for children with life-limiting conditions should be individualized and consistent with the values of the parents. 5,11–20 Clinicians should communicate the heterogeneous nature of T13-18, as well as the uncertainty associated with the benefits and risks of interventions. Interactions with parents to make these decisions are complex.…”

Section: Discussionmentioning

confidence: 99%

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

et al. 2019

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Background: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. Aim: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. Design: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. Setting/participants: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. Results: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make—or be part of—life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. Conclusion: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.

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Section: Discussionmentioning

confidence: 99%

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

et al. 2019

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“…Generally, cardiac surgery including palliative procedures (pulmonary artery banding, ductus ligation) and intracardiac repair (closure of ventricular septal defect in most) was performed safely and seemed to contribute to longer survival in children with trisomy 18 or trisomy 13. This was demonstrated in a cohort of the multicenter Pediatric Cardiac Care Consortium in US [Graham et al, ]; in a tertiary medical center in Japan, the Japanese Red Cross Medical Center [Kaneko et al, , ; Kobayashi et al, ]; in a tertiary medical center in Japan, Kyushu Koseinenkin Hospital [Muneuchi et al, ]; in a multicenter registry of the Japanese Society of Pediatric Cardiology and Cardiac Surgery [Maeda et al, ]; in a tertiary medical center in Washington, DC, Children's National Health System [Costello et al, ]; in the Tracking Rare Incidence Syndromes (TRIS) project [Bruns and Martinez, ]; and in a tertiary medical center in Japan, Nagoya City University Hospital [Nakai et al, ].…”

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confidence: 99%

Does medical intervention affect outcome in infants with trisomy 18 or trisomy 13?

Kosho

Carey

2016

American J of Med Genetics Pt A

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“…Studies from Japan also reported improved survival in trisomy 18 infants with congenital heart defects, if provided with intensive cardiac management including pharmacologic ductal intervention as well as cardiac surgery. [15][16][17] In our series, there were five infants with ductal-dependent congenital heart diseases. All the five infants received prostaglandin E1 infusions and one underwent cardiac surgery.…”

Section: Discussionmentioning

confidence: 87%

Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States

et al. 2016

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Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. We reviewed the initial hospital course, management, and factors predicting discharge from the hospital from two large tertiary care neonatal intensive care units in the southern United States over 26 years. Of the 29 infants with trisomy 18, 21 (72%) died in the hospital and 8 (28%) were discharged home. 19 (66%) infants received mechanical ventilation and 10 (34%) received inotropic medications. Eight infants had critical congenital heart defects; only one survived to discharge. Three infants underwent major surgeries; one cardiac surgery, one tracheoesophageal fistula repair, and one myelomeningocele repair. Median length of hospital stay was 14 days (range, 0-78) for all the infants and 31 days (range, 18-66) for those that were discharged home. Factors associated with discharge from the hospital were female sex, higher gestational age, and absence of critical congenital heart defects. Median survival time was 13 days and was significantly longer for females compared with males. Our 1-month and 1-year survival rates were 31% and 3.9% respectively. A significant proportion of infants with trisomy 18 were discharged home. These data are helpful in counseling parents of infants with trisomy 18.

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Effectiveness of cardiac surgery in patients with trisomy 18: a single-institutional experience

Cited by 18 publications

References 22 publications

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

Does medical intervention affect outcome in infants with trisomy 18 or trisomy 13?

Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States

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