"I want to help others, so they won’t give up" – Living on parenteral nutrition
September 22, 2016
Living on clinical nutrition demands tremendous discipline. But for a child, being different from all the other kids just might be the hardest part.
Anthony Bauer was only 8 when his life hung from a thread for the first time, back in 2004. He began suffering from intense stomach pain and doctors at the HELIOS St. Johannes Hospital, in the German city of Duisburg, diagnosed a volvulus, a rare form of intestinal obstruction caused by a twisting of the intestine. "It felt like something was trying to burst out of me," he recalls. Because the twisting had cut off the blood supply to part of the intestine, a large part of Anthony's digestive tract had to be removed in an emergency operation – saving his life, but changing it forever.
That was the start of a possibly unique medical history: Ever since the surgery, he has been missing a large part of his small intestine, without which the body cannot break down food to obtain essential nutrients such as fat, cholesterol and vitamins. Anthony can still eat, but the food passes from his body almost completely undigested. That has left him dependent on parenteral nutrition – a specially constituted solution containing all essential nutrients that is administered directly into his bloodstream. "A liquid-filled bag became my constant companion," Anthony says with a grin.
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.
Perhaps not surprisingly, Dr. Seiffert and his team have become almost a second family, and the close relationship can be seen in Anthony's joyful reaction when the doctor arrives in his room for a consultation, which ends up being punctuated with regular laughter. "I know basically everyone here in the ward – we even play soccer together sometimes," Anthony says. "Without them, I probably wouldn't be alive."
If not for his illness he might even have become a professional soccer player, Anthony says, and judging from the smile that follows that statement, combined with his humor and friendly manner, it is clear that he has come to terms with his health problems. In fact, he is now doing an internship in HELIOS St. Johannes Hospital's nutrition clinic, and wants to study nutritional medicine. It is a subject that his life has already taught him a lot about, and he wants to work with children who are dealing with the same things he had to go through. "I want to help others, so they won't give up," says Anthony.
Pictures: © Myriam Kasten