Health Times reporter Yao Xinran Capital Pediatric Research Institute Chi Yang
"Tonight, the Beijing driver please give way to this car." On the afternoon of March 2, a message swept across the circle of friends of many netizens in Beijing. It was a life-and-death rescue spanning 2,300 kilometers, 12 hours and 30 minutes from Nanning to Beijing, to make way for the life of an 8-month-old child with spinal muscular dystrophy.
At 23:46 on March 1, the Beijing bus police released a message to safely deliver the 8-month-old critically ill child, Xiao Pizi, to the Capital Pediatric Research Institute. Finally relieved.
The train arrives at Beijing West Railway Station. Picture according to "Beijing Bus Police"
On the morning of March 2, the People's Daily health client reporter contacted the Capital Pediatric Research Institute, according to the introduction that the child has been successfully hospitalized, and a series of examinations and expert consultations will be carried out next.
From illness to diagnosis, from Nanning to Beijing, Xiao Pizi's family spent the longest and most tossing and turning 3 months. Coming to Beijing, although the next treatment is full of unknowns and uncertainties, at least the green channel of life has been opened.
Transshipment spanning more than 2,000 kilometers
When Xiao Pizi was 5 months old, he was diagnosed with spinal muscular dystrophy, a rare disease caused by degeneration of motor neurons in the anterior horn of the spinal cord, resulting in muscle weakness and muscle atrophy, with an incidence of about 1 in 10,000. If not treated aggressively, the child will gradually have multi-system functional damage, and eventually respiratory failure will occur, and life may be terminated at any time.
Not long ago, Xiao Pizi, who was only 8 months old, developed a lung infection in the local hospital, was seriously complicated by respiratory failure, and was in a critical condition. "The child has been admitted to the intensive care unit since the end of January because of the deterioration of her condition, and she has never been able to get out of the ventilator, in order to save the child's life, we communicated with the doctor and decided to take her to the Capital Pediatric Research Institute for treatment." In an interview with Beijing Daily, Xiao Pizi's mother told the origin of the thousand-mile rescue.
The Capital Pediatric Research Institute received a transfer request and formulated a detailed transfer plan with the local hospital in Nanning.
At 8:23 a.m. on March 1, Xiao Pizi, who was plugged in a ventilator, was asleep, escorted by medical staff and his family, and boarded a train to Beijing.
During the 12-hour and 30-minute long-distance transfer, the medical team made meticulous preparations. On the morning of February 28, two doctors with all the experience of multiple transfers of the first child made a special trip from Beijing to Nanning. The biggest difficulty in the transfer process is that Xiao Pizi has been unable to get rid of the ventilator due to the deterioration of his condition, and needs to conduct a physical assessment before departure, and at the same time needs to debug the ventilator specially suitable for transfer according to the physical condition.
The carriage from Nanning to Beijing is equipped with ventilators, ECG monitors, microsyring pumps, suction aspirators and oxygen concentrators. Family members, doctors, engineers in charge of debugging ventilators, and xiao Pizi, who is guarded by police on the train, also touch the hearts of medical workers in Beijing more than 2,000 kilometers away.
The hospital is reached in 30 minutes in the city
"The train will arrive at Beijing West Railway Station at 20:53 tonight." Beijing Municipal Public Security Bureau Bus Corps Beijing West Railway Station Police Station received the news that they will welcome a special small passenger, a thousand miles rescue relay race, and then this stick is handed over to the hands of the police uncle.
Time is of the essence. After grasping the relevant situation, the Beijing West Railway Station Police Station, the Railway West Railway Station Police Station, and the Traffic Brigade of the Fengtai Detachment west station of the Beijing Municipal Traffic Management Bureau jointly refined and coordinated the transfer and rescue plan. At the same time, the police station deploys police special police to take care of it in advance, and does a good job in rescue escort and transfer channel control to ensure that the processes are seamless.
As early as the morning of March 1, the message "Tonight, Beijing drivers please give way for this car" was "relayed forwarded" in the circle of friends of many Beijingers. That night, the train taken by Xiao Pizi arrived on time, and the police who had been waiting for a long time on the platform immediately went forward to dock with the police on the train, held the baton to rescue "Xiao Pizi", quickly opened the way for the medical staff, and finally arrived at the hospital in only 30 minutes.
Xiao Pizi was smoothly transferred to the Capital Children's Research Institute. Picture according to "Beijing Bus Police"
Has been hospitalized for consultation and treatment
Xiao Pi Zi belongs to the children with spinal muscular dystrophy who start in infancy and childhood, and its diagnosis and treatment requires multidisciplinary comprehensive management and evaluation of children's neurology, respiratory, orthopedic/spine, rehabilitation, clinical nutrition and other multidisciplinary management and evaluation. Generally speaking, the formulation of the diagnosis and treatment plan also needs to refer to and compare the "Clinical Practice Guidelines for Spinal Muscular Atrophy" published by the Clinical Practice Guidelines for Genetic Diseases of the Genetics Branch of the Chinese Medical Association for treatment.
Rare diseases such as spinal muscular atrophy have been well known for their sky-high prices, and in the 2021 national medical insurance drug list negotiations, 7 rare disease drugs are included in medical insurance, and the only drug for spinal muscular dystrophy is among them. On January 1, 2022, the "National Basic Medical Insurance, Work Injury Insurance and Maternity Insurance Drug Catalogue (2021)" was implemented, and the "sky-high price drug" of more than 700,000 yuan per injection in the past was reduced to more than 30,000 yuan per injection.
According to the Capital Pediatric Research Institute, the next children's research institute will be seamless, conducting a series of examinations for Xiao Pizi and organizing relevant experts to consult and tailor the next treatment plan.