In honor of Trisomy Awareness Month:
Common things doctors say to parents after receiving a T18/13 diagnosis:
“We advise that you terminate.”
“T18/13 is incompatible with life.”
“We do not do interventions on a baby with T18/13.”
“Your baby will suffer.”
“Choosing anything but termination/comfort care is cruel.”
“They will be a vegetable.”
“They won’t smile, walk, eat, etc…”
“Your baby will have no quality of life.”
“A baby with T18/13 is really hard on families.”
Now, can you imagine how different this conversation would look with this information…
In a survey of >350 parents of children with Trisomy 13 or 18: Most chose comfort care for their infant; 30% lived >1 year.
Of infants who received interventions, 50% lived >1 year. Half said care of a disabled child is/was harder than expected. [Javier, et. al., 2012]
89% reported a positive enriching experience regardless of lifespan. [Javier, et. al., 2012]
In Japan, a study of children with Trisomy 18 in which intensive care was offered the median survival rate was 152.5 days. The survival time after 12 months was 25% which is marked higher in comparison to previous studies. [Kosho, et. al., 2006]
Smiling for Samuel 