June 1 feature | Children with spinal muscular atrophy: they are one in 10,000, eager to breathe freely
This is the fifth "June 1" Children's Day that Ms. Cheng has spent with Mengmeng. There is still no amusement park, no marshmallows, and only a love that does not dare to leave.
Ms. Cheng is the mother of two children. The youngest daughter Mengmeng is 4 years old and has spinal muscular atrophy (SMA). This is a rare disease in children, and the incidence rate in newborns is about 1/6000 to 1/10000. SMA can cause severe muscle atrophy and weakness. It is difficult for patients to achieve ordinary turning, leg kicking, and crawling, and even breathing and swallowing become luxury.
Doctors once said that children with SMA generally do not live up to 2 years old, but Mengmeng has passed the 4th birthday with perseverance far beyond the age and desperate parents.
"How can I abandon her"
"Mom, I want to suck sputum."
Although there was no sound in her small mouth, Ms. Cheng understood these 6 words from Mengmeng's slightly exaggerated mouth.
She immediately stood up and changed the tube, injected, and opened the sputum machine neatly. As the syringe propelled into the nasal tube, the cute brows frowned, and the small white face slowly turned red. The obvious pain on his face made everyone present worry.
When the nasal tube took back to the ventilator, the little girl's brows spread out, and suddenly a Maitreya-like smile came. The dim ward seemed to be immediately illuminated by this bright smile, and the head nurse also laughed.
"In order to take care of her and see her for treatment, we sold the house of Gao Chun's home and lived in the car in Nanjing City to save money." Ms. Cheng said while massaging Mengmeng's little feet, her eyes never left her daughter. s face. "She stuck the tube and couldn't make a sound. If there was phlegm, it would be life-threatening at any time. So, I was in the ward all day, and her father would come over to watch the night shift at night, and must be guarded 24 hours." Ms. Cheng said .
Ms. Cheng was originally a designer, so she had to quit her job in order to be cute. The child's father had opened a snack bar before, but later, because he had to go to the hospital at any time and encountered an epidemic, the snack bar was temporarily closed.
Usually sputum, massage, and rehabilitation treatment will bring severe pain to children with SMA, but Mengmeng never cries.
In June last year, under the recommendation of a doctor, Ms. Cheng joined an SMA group, and the patients held groups to keep warm. "Some patients in the group will also leave the group from time to time. Before, a parent showed us the video when the child left. The child in the video couldn't speak, but kept looking at her mother with her eyes, looking at, looking at. Until leaving ... "Ms. Cheng's voice became trembling, and her unstoppable tears rolled down. "To be honest, at that time my heart seemed to be twisted into a ball, shock, fear, pain ... These negative emotions have troubled me for several days. She (Mengmeng) is so brave, smart and sensible, how can I give up she was?"
During the meal, Ms. Cheng's eyes did not dare to leave her daughter's face. At this time, Mengmeng will poke her mouth, put on a "hot, blow to mother" mouth shape, and use her weak body and powerful small universe to make Ms. Cheng feel that as long as her daughter is around, coarse tea and light rice are also sweet.
In order to take care of her daughter, Ms. Cheng and her lover are very concerned about some nursing experience and first-aid knowledge shared in the group, because they know that these skills can save their daughter's life at a critical time.
"Whether it is in the group or here, Ms. Cheng has learned very hard and fast, and now she has learned the basic full set of nursing!" The head nurse witnessed the whole process of Ms. Cheng's growth from a half-knowledge to practice to make perfect, "These strong parents And brave children, let me admire in my heart! "
Little-known SMA
Spinal muscular atrophy (SMA) is an inherited neuromuscular disease.
According to a report from ChinaNews.com, Professor Zhou Shuizhen of the Pediatric Hospital Affiliated to Fudan University said that SMA is not uncommon in rare diseases, and the incidence rate in newborns is about 1/6000 to 1/10000. The motor neurons in the anterior horn of the spinal cord and the lower brainstem are lost and degenerated, resulting in severe muscle atrophy and weakness. The patient cannot even achieve ordinary turning, leg kicking, and crawling. Eventually, patients with SMA may lose walking ability, and The occurrence of breathing and swallowing disorders imposes a heavy burden on the family.
According to Zhou Shuizhen, SMA is divided into SMA-I type, type II, type III and type IV according to the age of onset and the achievement of sports mileage. Without treatment, most children with type SMA-I cannot survive to two years of age.
Many people do n’t know that although the whole body of the child with SMA is degenerated, it does not directly cause death-it is pneumonia that really takes the child ’s life. Because children are generally young and weak, even with a common cold, coughing during eating, and unintentionally inhaled dust, they can cause pneumonia. Coupled with their low lung muscle strength, it is difficult to sputum spontaneously. Once sick, there is a risk of choking and choking. Therefore, the provision of expectorator and ventilator is particularly important for families with SMA children.
On January 8, 2020, Mengmeng was suddenly blocked by phlegm, suddenly unable to breathe, and his face turned purple. Thanks to Ms. Cheng and her husband's certain first aid knowledge, and the timely delivery to the hospital, Mengmeng was recaptured from the death. But from then until the end of April, Mengmeng never left the ICU.
Later, due to the outbreak of New Coronary Pneumonia, the hospital restricted the visits of parents for the sake of child safety, and Ms. Cheng and her husband were in a hurry. In order for children to be transferred to ordinary wards, they must be equipped with a ventilator, but the high price of medical equipment at that time made this family who was under great financial pressure uneasy.
At the beginning of 2020, the charity organization Aid Foundation launched the pneumonia rescue project for children with SMA, and plans to raise 20,000 yuan for medical emergency relief for each of the 20 children. Knowing the information, Ms. Cheng submitted the application with a try mentality, and soon Mengmeng received the 20,000 yuan donation.
On April 27, Mengmeng finally left the ICU ward where she had been staying for more than 3 months, and transferred to the ordinary ward ... A family of three, finally reunited for a long time.
Not crying in front of her daughter is Ms. Cheng ’s last stubbornness: "I ca n’t cry, the child will be sad when I see it!" But, as he said, the tears that kept rolling in his eyes still fell down "incongruously". After Mengmeng saw it, she tried to open her eyes and opened her mouth hard. According to the mouth shape, we read her meaning on the side-
"Mom, don't cry!"
Xiaomengmeng is sensible and intelligent. After holding a recognition card and showing it to Mengmeng several times, Ms. Cheng found that her daughter actually remembered it. The extremely strong learning ability and spirituality allow Mengmeng to read simple books quickly.
According to Mengmeng ’s eyes, Ms. Cheng will also put various beautiful stickers on the wall. From a distance, it is a colorful painting; usually, observing a row of cartoon toys on the cabinet can also give Meng Moe brings endless fun.
Ms. Cheng said that she often opened the music box and lifted it in front of her daughter, listening to Dingdong ’s crisp music. Every now and then, Mengmeng always smiles happily, and the splendid radiance of the music box is reflected in the curved eyes.
Surging News Senior Reporter Cheng Zhen Correspondent Wang Pei Lu Yi