Anyone meeting this cheerful and charming 20-year-old today would never guess the burden he has had to carry, because clinical nutrition requires precise planning and a lot of effort. That is difficult for the young – in fact, it is complicated even for the doctors. “We still re-compound the nutrients mixture every week, because his life circumstances change constantly,” explains Dr. Peter Seiffert, Chief Physician of the Department of Pediatrics and Adolescent Medicine at HELIOS Hospital Duisburg
, who has treated Anthony since the start.
Getting the right mixture for parenteral nutrition is a balancing act, because the nutrients must be precisely measured, right to the last milligram. When growing, or under physical strain, the body needs more energy, and Anthony also takes all his medications parenterally. “In the first weeks after his surgery he had to be lying down for up to 20 hours a day, while the nutrients were introduced into his bloodstream through a catheter,” Dr. Seiffert explains. “Today, fortunately, it is enough for the bag to be attached overnight.”
The port for the catheter is implanted just under Anthony’s left shoulder and must be kept sterile, which requires constant bandage and dressing changes. That took a lot of getting used to. “There were times when I was angry because everything was so complicated,” Anthony admits. “I just wanted to play soccer and simply live my life, like the other kids my age.”
The doctors understood that, and put him on the list for a transplant as soon as possible; the procedure took place when he was 10, but Anthony’s body reacted badly to the transplanted small intestine and it had to be removed. In the following years there were other medical setbacks, including liver and pancreas infections, and Anthony even lost his sight for several days due to a vitamin deficiency. But the worst came in 2010, when he was 14 and contracted tuberculosis: The bacteria moved not only into the lungs but also into the spinal column, joints and brain. Without a protracted period of drug therapy and constant medical care, he might not have made it.