Four-month-old Misha Domrachev from Yoshkar-Ola The rarest and most severe form of intestinal obstruction is Hirschsprung’s disease, which is characterized by the absence of nerve tissue in the large and part of the small intestine. The child has already undergone three operations, as a result of which doctors were able to save only a small part of the working small intestine. In early November, Misha was discharged from the hospital home. The child is on intravenous nutrition 17 hours a day, but the supplies he was provided with at the hospital will soon run out. Food is very expensive; a family with three children does not have the means to buy it.
Four-month-old Misha has a severe form of intestinal obstruction. The child is on intravenous nutrition 17 hours a day, but the supplies he was provided with at the hospital will soon run out. Food is very expensive; a family with three children does not have the means to buy it. Help is needed
Misha was born with a severe form of intestinal obstruction. After three complex operations, he retained only 40 centimeters of his small intestine. This is very little! Doctors promise that by the age of two the intestines will have grown and will be able to cope with stress. In the meantime, the baby receives his main food intravenously.
“At this age, children are supposed to eat 70 grams of nutritional formula every three hours, but Misha’s doctors allowed only 20,” sighs Lyuba’s mother. “He is tormented by hunger, but if you give him even a gram more, constipation will occur, his stomach will swell, and terrible pain will begin. It’s better not to think about it…
Misha was born almost a month ahead of schedule. For his mother, the third birth was the most difficult. The baby was immediately taken to intensive care.
“On the fourth day, Misha began to breathe on his own, without a machine, and the doctors put him in a feeding tube,” recalls Lyuba. “However, all the food came back through the tube. But what was most frightening was that my son had no bowel movements at all, enemas did not help. He was placed back on intravenous nutrition. And we were stuck in hospitals for four months.
Examinations showed that the baby had intestinal obstruction. Surgery was required, and as soon as possible.
In the Republican hospital in Yoshkar-Ola, Misha was operated on twice, but his intestines did not work, an inflammatory process developed, and his temperature remained high. Antibiotics did not help, and there was a danger of sepsis.
“Misha’s condition was very serious,” recalls Lyuba. “My son was rapidly losing weight, he was pale, lethargic, and stopped responding to my touches. Local doctors did not know what to do with him. We invited the priest to the hospital to baptize the child and hoped for a miracle.
Lyuba calls what happened next to Misha a miracle. Moscow doctors from the National Medical Research Center (NMRC) for Children’s Health immediately responded to the request of their colleagues from Yoshkar-Ola and invited Lyuba and Misha for examination and treatment.
On August 7, Misha was taken by ambulance to the National Medical Research Center, to the neonatal surgery department. Three days later, the third operation was performed; it lasted six hours.
After the operation, Misha finally began to have stool, and his stomach stopped swelling. The temperature has dropped.
“Two weeks later, we tried feeding our son through a tube in tiny portions, 5 milligrams each. The mixture was absorbed! – says Lyuba. — We fed him every three hours to “start” the intestines. But the main nutrition was supplied around the clock through a vein.
Misha began to gain weight and show interest in the world around him. “It’s like being born again,” notes Lyuba.
On September 25, the baby was fitted with a permanent catheter for long-term administration of intravenous nutrition. Then Misha and his mother were transferred to the Filatov Children’s Hospital, where children with short bowel syndrome are successfully treated. There, the optimal composition of intravenous nutrition was selected for the baby. And Lyuba learned to administer nutrient solutions using a special system – an infusion pump.
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the cost of medications, intravenous nutrition and consumables for its administration for six months
In early November they were discharged home. Four months after birth, Misha finally saw his dad, sister and brother. All that remains is to solve the problem with intravenous nutrition.
“We are now registering Misha’s disability and have already contacted the regional Ministry of Health to provide our son with everything he needs. But the issue cannot be resolved so quickly. This may take six months. “I’m very afraid that soon I will have nothing to feed my son,” says Lyuba.
Intravenous nutrition for six months costs more than a million rubles. Misha’s parents won’t be able to raise that kind of money on their own. They need help.
Misha was born with intestinal obstruction as a result of a disorder in the formation of the neuromuscular apparatus of the large and small intestine (Zulzer-Wilson syndrome), this is the rarest and most severe form of Hirschsprung’s disease. The baby underwent a series of operations, preserving normally formed parts of the intestines. Now Misha is growing and developing mainly due to nutrition, which is administered intravenously. The boy can stay at home with his family, provided that he is provided with food, necessary equipment and medicines
Head of the Department of Pediatrics, Children’s City Clinical Hospital named after N.F. Filatova (Moscow)
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