Eloi, a Bubble Baby
Hubert Fanthomme
Paris Match
There is a plastic barrier between the mother’s lips and her baby’s skin. Eloi is one of the 25 babies who, every year in France, have a bone marrow transplant and need to live in total isolation, in a plastic bubble, for weeks or months. He suffers from ectodermal dysplasia with severe combined immunodeficiency (SCID), genetic disorders passed on by the mother. Eloi is Marie’s third son, and it was not until Jacques, the second one, died that she discovered that she was carrying the gene mutation which causes the disease in male children. We spent nine months with Eloi, Marie and the family, in their daily life, a life that entailed a great deal of suffering, particularly for Eloi. We saw him screaming and writhing in pain behind the transparent barrier when only four months old; and the suffering of his mother, deprived of the skin contact that is so soothing for a newborn child in pain, stricken by a sense of helplessness. And there was anxiety and anguish, fearing that the graft might be rejected, and the threat of death for Eloi. Then there were glimmers of hope, as every gram of weight gained and immediately noted by his mother, was a victory over disease; and moments of great tenderness, quite simply of love, the love between mother and child. Hubert Fanthomme experienced these moments and recorded them with his camera, with his own kindness and compassion.
Preview
Hubert has the special ability of being able to put down his camera to look and listen, to take notes in his little black Moleskine book. He also has the knack of making people forget that he is there, disappearing and then discreetly catching the most private moments with great reserve. With a gentle, calm voice, the touch of a hand on a shoulder, a sympathetic glance, he can establish a climate of trust, with the parents and also the children who gaze at him, mesmerized, then smile and promptly forget that he is there.
The report was done at Necker children’s hospital in Paris, and was Hubert’s second story on a sick child. In 2008, he did a feature showing the life of extremely premature infants, a very moving report. Hubert had spent months at Port-Royal maternity hospital in Paris and has remained in contact with both the mothers and children. While Hubert has no children himself, he talks about children being “life,” just as I do when I talk about my daughter, observing that when in contact with children, feelings of both happiness and sorrow achieve full intensity. We both trembled in fear for Eloi, just as we shared in the enthusiasm when he swallowed his first spoonful of food, and when he first walked. It was difficult not to turn away from the sight of the tiny baby, hands and legs tied inside his bubble, when the nurses changed his tubes.
Hubert is a photographer and a man who likes to take his time. Indeed he has repeatedly drawn criticism for this: “You spend too much time with people” (e.g. with personalities he has often photographed for Paris Match). Now he has adopted this as his motto. For Hubert, links are established without words.
Mariana Grépinet / Paris Match, July 2010.
