Written and photographed by Chih-Hao Wu
A rare CdLS (Cornelia de Lange Syndrome)
disorder Sharp pain
darts between nerve cells
A slight relief only to be followed
by the lingering discomfort and depression
The incurved pinkie chewed down bit by bit,
Like an insect that birds are fighting for.
Flesh being torn away layer by layer,
Like the collapse of an iceberg.
The doctor’s will is also nibbled,
then Crumpled with sorrow.
The only thing not shattered
is the mother’s petrified heart
(To gently hold and support)
After a long wait,
a whole season is pushed backward.
The trickling drop
Be it not just the gentle spring rain.
Xiao-Ting (a fictitious name) is a girl who repeatedly bites her pinkie. It is heart wrenching to watch her self-mutilating behavior as a result of the rare genetic disorder CdLS (Cornelia de Lange Syndrome).
Years ago, I performed the Full Mouth Rehabilitation on her under general anesthesia. I captured this photo when her family member held her hand in the recovery room.
This rare form of disorder is often accompanied with multitudes of growth and developmental delays and abnormalities: slow growth, small stature, heart defects, seizures, mental developmental delays, partially joining of toes, incurved fifth fingers, etc. These can cause serious discomfort and depression that lead to self-mutilation.
That night after I finished her surgery, I was overcome with sadness for a long time…
About the Author
Dr. Chih-Hao Wu
is the Director of Family Dentistry at Hualien Tzu Chi Hospital, Fourth Chairman of the Kuroshio Ocean Educational Foundation.
Dr. Wu moved to Hualien and has served at Hualien Tzu Chi Hospital for 15 years. In recent years, he focuses his effort on establishing dental treatment and early intervention for children with physical and mental disability.
At the age of 17, he was inspired by the master photographer YiZhong Ruan’s “Lost” published on the Renjian Magazine and has been deeply influenced by the magazine’s photojournalism ever since. At the age of 30, he apprenticed under Baugu Anao to learn black-and-white photography and darkroom print processing. His favorite photographers in Taiwan also include Xiaorong Guan, Jingtai He, Yongjie Zhang, etc. Directed and shot by Xiangyu Liu and Jianli Lin. The documentary film “A Small Doctor in A Small Town of Mountain And Sea” featuring Dr. Wu’s personal story has won the Huilan Award in the documentary category at the 2010 Huilan Art Exhibition.