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[Survival, Medical Care and Quality of Life in Children with Trisomy 13 and 18]
A Kusztrich1, D Hüseman2, L Garten1
1Charité University Medical Center, Clinic of Neonatology, Berlin.
Insights
Most infants with trisomy 13 (T13) and trisomy 18 (T18) pass away neonatally. However, mothers of longer-surviving infants reported positive quality of life experiences.
Area of Science:
- Genetics
- Pediatrics
- Neonatology
Background:
- Infants with trisomy 13 (T13) and trisomy 18 (T18) have known early mortality.
- Parents seek information on life expectancy and quality of life for these infants.
Purpose of the Study:
- To evaluate life expectancy and quality of life in infants with T13 and T18.
- To understand parental experiences with medical care for infants with T13 and T18.
Main Methods:
- Retrospective chart analysis of cytogenetically confirmed T13 and T18 cases (1980-2010).
- Mothers of infants surviving at least 3 months were interviewed regarding quality of life and medical experiences.
Main Results:
- Median survival: 5 days for T13, 19 days for T18.
- One T13 and two T18 children survived past one year.
- Mothers of infants surviving >3 months described them positively and supported interventions, desiring coordinated care and psychological support.
Conclusions:
- While most infants with T13 or T18 die neonatally, longer-surviving infants can have a positive quality of life.
- Mothers' experiences highlight the need for coordinated medical care and psychological support for families.
Background:
While infants with trisomy 13 (T13) and trisomy 18 (T18) are known to die early, parents want to know more about life expectancy and quality of life.
Methods:
30-year single-center retrospective chart analysis (1980-2010) of cytogenetically confirmed T13 and T18 cases. Mothers of infants who had lived 3 months or longer were approached to judge their infant's quality of life and talk about their experiences with medical staff.
Results:
Data of 18/20 T13 infants and 18/21 T18 infants could be retrieved. Median survival times were 5 d for T13 and 19 d for T18. One T13 and 2T18 children survived past 1 year. Out of 5 mothers whose infants had survived at least 3 months, 4 described their infant as friendly, happy and peaceful. They observed some degree of psychomotor development and were in favour of the numerous medical and surgical interventions performed. They wished to have had a doctor coordinating these interventions and missed an active offer for psychological help.
Conclusion:
While most infants with T13 or T18 die as neonates, mothers of infants surviving longer periods of time have positive memories about their infants' quality of life.
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