SAKURAI Hiroko Self-introduction at the Workshop in Australia
March 5, 2009
My name is Hiroko Sakurai. I am a postgraduate student at the Graduate School of Core Ethics and Frontier Sciences, Ritsumeikan University and the Representative of the Trisomy 18 Support Group, Japan.
I will talk a little bit about terminal care for newborns with congenital diseases in Japan.
Concerning infants with Trisomy 18 in Japan, medical professionals in Japan are good about informing parents about issues like coexisting illnesses and prognosis severity. But there is not enough public information or discussion in Japan about possible treatments and healthcare for infants with Trisomy 18, about the quality of life of both the infants and their parents or about the type of care that parents hope for their infants. In addition, medical professionalsf expectations for infants with trisomy 18 are often quite low. So, current treatment for most infants with Trisomy 18 provides only temperature control, internal nutrition, skin care and love. Therefore, when medical staff members inform parents of the condition of their childfs illness, they often preface treatment choices with gwe do not provide active treatmenth or comment on the babyfs gshort life.h Actually, in Japan, there is no uniform treatment protocol, so some hospitals provide no active treatment but only concentrate on palliative care, while other hospitals provide active treatment in consideration of parentsf hopes and requests. In Japan, childrenfs hospitals have a terminal care rooms for infants and their families. Parents can stay with their infant with until death. But grief care is not give by the hospital staffs, so support groups must assume the role of providing this care.
I hope you have found this informative. The distributed documents give details about the current situation of infants with trisomy 18 and about the efforts of parents and their children to build strong relationships in neonatal intensive care units.