Strange disease makes mother spend 2 hours every day bathing her child

'In the 5 years since my child was born, I have rarely been out, mostly just to take him to the doctor somewhere. While he was sleeping, I went to the field to find some kind of Indian pennywort plant to bathe him,' the mother confided.

The small, pretty two-story house in a residential area in Ngoc Hoi (Thuong Tin) is cool and unusually clean. The walls are covered entirely with shiny white tiles. The floor is also free of dust. Ms. Phuong, Dinh Phong’s mother, cleans the house every day to create the cleanest environment for her child.

Her second child, Dinh Phong, was diagnosed with epidermolysis bullosa as soon as he was born. Ms. Phuong had to quit her job to stay home and take care of her child. Although the child is now 5 years old and can play and sleep by himself, Ms. Phuong still has to work as hard to take care of him as when she was still holding him.

A rare disease causes Phong's skin to become thin, including the mucous membranes, so he cannot eat anything other than pureed porridge. Photo: Phan Duong.

The day she went into labor was the last C-section of the night. After giving birth, she only had time to glance at her baby and saw that he had unusually red lips. A midwife said, "You're giving birth late and you're having this case," which made her feel uneasy.

The mother and child were separated into two different rooms. She asked the doctor and heard the name of epidermolysis bullosa for the first time. Two days after giving birth, she was allowed to stand outside and look at her child. "When we took her away, she only had red lips, but the next day her whole body was bandaged and she was gasping for breath in an incubator," the 35-year-old mother recalled.

Her husband went online to learn about the disease. As he read, his limbs became weak. The disease that caused ulcers all over his body, a life worse than death, had happened to his child. But then, the strong man, who used to be a soldier, quickly regained his composure. "Fate has chosen me. I have to accept it to take care of my child to the best of my ability," he told himself and also encouraged his wife.

Children with this disease are born with a special bond that prevents the top layer of skin and the next layer of skin from sticking together. The child's skin often has blisters and is easily scratched and infected. Caring for the child is extremely difficult because the skin is very fragile and can easily become sore when wearing diapers or being held or crawling. Some children are severely affected, even their digestive tract is damaged, making it very difficult to eat.

Video:Baby Phong has never eaten solid food. Meals are difficult because he has to avoid the spoon touching his mouth.

After 11 days in the hospital, baby Phong was able to go home. During her baby's infancy, the mother lived in extreme hardship..The child was in so much pain that he could not lie down or even hold her. Her eating, sleeping, and going to the bathroom were beyond the normal routine of a child. At that time, the couple, her grandmother, and the maid still felt overwhelmed.

Ms. Phuong always has to observe her child to promptly detect new pimples and use a medical needle to poke them out, to prevent them from spreading. "We joke that my husband and I are like scouts. Every night, he tricks the child into sleeping, then the husband shines a light on them, and the wife holds a needle to find pimples in the child's mouth and pokes them out," Ms. Phuong said.

The fingers had to be bandaged one by one. Thanks to proper care from birth, the baby was fortunate to not have fused fingers like many other children.

Baby Phong was chubby at birth.

The first 6 months, despite the extremely difficult care, the baby was still healthy, gaining weight steadily, and was chubby. But after only 6 months, the baby fell ill and died -sepsis, starting with a mosquito bite-like bump on one leg.

The doctors called the couple to make sure they were mentally prepared and signed a commitment that even if the baby was lucky enough to survive, the other leg might not be saved.

"After 12 days of high-dose antibiotics, miraculously the baby got better. At that time, the doctors and even the security guard said the baby had miraculous vitality. Even though he was in so much pain, he still craned his neck like a bird to receive every drop of milk," Ms. Phuong emotionally recalled.

Now, when the child is 5 years old, her day starts at 7am, cooking porridge for the child, cleaning the house. The child eats pureed food completely and it takes an hour each time. Then she does the laundry, boils hot water to soak clothes to sterilize. At noon, she feeds the child the second meal of the day. The child wakes up at 4pm and is given a light meal. After that, Ms. Phuong boils herbal water and bathes the child, which takes a fixed 2 hours every day.

"First, undress the child, lay him on the bed, remove each layer of bandage on his body. Observe his whole body to see if there are any new pimples and poke them. After finishing the bath, once again use 3 different types of bandages to bandage him," Ms. Phuong said.

The spots on his body are sometimes severe, sometimes mild, and both Phong and his parents always have to try. "Now he is a hero. Every time he bathes, his mother uses a needle to poke the spots, but his facial expression does not change," added Duyen, Phong's aunt.

Ms. Phuong has to feed her child lots of vegetables and take digestive enzymes every day to limit acne. Photo: Phan Duong.

Unfortunately, her son was seriously ill, so Ms. Phuong could not pursue a career as a teacher and stayed home to take care of her son. Her husband used to work in the military, but to help his wife, he moved out to work in construction. Normally, the boy did not go to the hospital, and on average, the couple spent about 6 million VND per month on bandages.

"5 years since my child was born, the number of days I was able to go out"I rarely do this, mostly just when I take my child to the doctor somewhere. While my child is sleeping, I go to the field to find some kind of plant called "sai dat" to bathe my child," the mother confided.

Although he did not go to school, Phong was still taught by his mother when he was happy. In addition to singing in Vietnamese, he can sing some English songs.

"There are times when my child asks: 'Why don't you go to school?', 'Why can't you go out to play?' and I feel infinitely sorry for him. With this disease, he must avoid running, jumping, collisions, and limit contact with an unhealthy environment," Ms. Phuong confided.

Her husband also shared that Phong's favorite thing is to go to the zoo. "Once a year, my husband and I take our child on a 'trip' there. To avoid staying at home and getting depressed, I sometimes take him for a walk," he said, holding his child tightly and sadly.

According to VNE