- Shopping Bag ( 0 items )
From Barnes & NobleOur Review
A Story of Heart and Soul
The birth of a child is a time of rejoicing, a celebration of life, and a confirmation of love. But sometimes the path to that joy is a tortuous one when the child is born with a condition or disorder that means a lifetime of physical or mental disability. Such was the case for Jeanne McDermott and her husband, Ted. Their second son, Nathaniel, was born with an extremely rare and disfiguring genetic disorder known as Apert syndrome. The story of their journey and the remarkable lessons they, and others, learned from their special son is the subject of Babyface.
The main hallmarks of Apert syndrome are a premature and irregular fusion of the bones in the skull, which gives the child a long, bulging forehead and a flattened face, and a fusing of the bones in the fingers and toes. While brain function and intelligence in these children are usually normal, without major surgery to open up the fused bones of the skull and allow room for brain growth, the risk of brain damage becomes great. There is the potential for emotional damage as well, for even with surgery, the child will always look noticeably "different."
The McDermotts' reactions to their son's less-than-perfect appearance -- and their reactions to other people's reactions -- are described with brutal honesty. During the first year of his life, little Nathaniel faced several surgeries and setbacks, one of which nearly cost him his life. His story is told in alternating passages of high emotion and scientific objectivity, underlining Jeanne McDermott's love for her son as well as her background as a science journalist. Her depiction of the medical personnel they encountered is a real eye-opener, one that should make Babyface required reading for anyone involved in medicine.
McDermott tells of the strain Nathaniel's special needs placed on the family, from grandparents and aunts down to Nathaniel's older brother, who developed a few critical needs of his own. But she also tells of their unconditional, though not always uncomplicated, love for him. It is that, along with a questioning of one's fundamental beliefs about the importance of beauty, that shines through. Nathaniel's story has heroes aplenty, not the least of which is Nathaniel himself, whose gentle spirit and joie de vivre demonstrate what is truly important in life.