Children with rare diseases come to Beijing for treatment, and multi-party cooperation is carried out to carry out relay for life!

Beijing, 25 Dec (Xinhua) -- Recently, Xiao Jingyi, a 7-month-old child with spinal muscular atrophy who has attracted netizens across the country, came to Beijing for medical treatment across the province. Time is urgent, and many parties work closely together to carry out the relay of life.

On the morning of the 22nd, the Beijing Municipal Public Security Bureau issued a document calling on the public to give way to the ambulance transporting the seriously ill child. At about 5 p.m. on the same day, the two ambulances arrived at Beijing West Railway Station in advance according to the transfer arrangement to prepare for pick-up.

On the way to Beijing, Xiao Jingyi had a heart rate of 190 beats per minute on two occasions, which made her parents and accompanying emergency personnel nervous.

When Xiao Jingyi arrived in Beijing, it was the evening rush hour in Beijing, and the traffic was congested. With the help of Beijing traffic police, Beijing volunteer first aid volunteers and many other personnel, the ambulance successfully delivered the child to the Capital Pediatric Research Institute in only 16 minutes, which made all the people who cared about the child breathe a little relief.

Children with spinal muscular atrophy are transport site. (Courtesy of Capital Institute of Pediatrics)

On the afternoon of the 23rd, Xiao Jingyi, who had undergone various examinations, was successfully admitted to the respiratory medicine ward of the Capital Pediatric Research Institute.

Cao Ling, director of the Department of Respiratory Medicine, introduced that Xiao Jingyi has drug-resistant bacterial pneumonia, due to spinal muscular atrophy leading to respiratory muscle weakness, especially during the infection period, it can not maintain blood oxygen saturation, and needs to rely on ventilators to assist breathing. At the same time, Xiao Jingyi can not discharge the secretions in the airway, so after each use of atomization pump, vibrating sputum discharge, and postural drainage treatment, it is necessary to use a sputum coughing machine for oral and nasal suction. Respiratory failure can be alleviated through careful respiratory management plus antimicrobial treatment.

"Spinal muscular atrophy, although it mainly involves the muscles that are in charge of movement, it can also affect multisystem functions throughout the body, such as dysphagia, respiratory dysfunction, digestive dysfunction, and skeletal aberrations. Therefore, while using a variety of drugs, respiratory management is the first and most critical one. Cao Ling said.

The reporter learned that when Xiao Jingyi was 1 month old, the family found that the child did not even cry at all, and his breathing was not smooth. One month later, Xiao Jingyi was diagnosed with spinal muscular atrophy in the local area, which is a rare disease and accompanied by bronchopneumonia, respiratory failure and other diseases. However, Xiao Jingyi's parents did not give up, and after evaluation and examination, and communication with the attending doctor, decided to take the child to the Capital Pediatric Research Institute, which is one of the members of the National Rare Disease Collaboration Network, for treatment.

Cao Ling told reporters that at present, Xiao Jingyi's vital signs are stable, and there is some significant increase in heart rate, and follow-up needs to further evaluate the situation of nerves, cardiovascular, digestion, nutrition and other aspects, and treat them through multidisciplinary management methods.