Everyone has always been under the impression that they cannot go to the Children’s Hospital at the age of 18 as an adult. However, in the Children’s Hospital of Zhejiang University School of Medicine (hereinafter referred to as the Children’s Hospital of Zhejiang University), a 21-year-old mucopolysaccharide patient Yanyan became the first adult patient to be hospitalized, and also the oldest patient in the history of the hospital.
In September 2020, the Zhejiang Provincial Health Commission issued a reply on “Children’s Hospital Affiliated to Zhejiang University School of Medicine provides medical services for children over 18 years of age with special diseases”, agreeing that Zhejiang University Children’s Hospital can provide medical services for children over 18 years of age. Continuous medical services are provided to children who are one-year-old with leukemia requiring staged chemotherapy, congenital heart disease with staged surgery, long-term treatment of inherited metabolic diseases and rare diseases.
Why do I still have to go to the children’s hospital when I am an adult
Why do patients like Yanyan still go to the Children’s Hospital when they reach 18 years of age? This has to start with the special diseases that the children suffer from.
The mucopolysaccharidosis that Yanyan suffers from is a group of genetic rare diseases with an incidence of about 1/25000. It is mainly due to the defect of the lysosomal hydrolase required to degrade mucopolysaccharides, resulting in the accumulation of a large amount of mucopolysaccharides in the tissues, which can cause Skeletal development disorders, hepatosplenomegaly, mental retardation, etc., require long-term treatment by a professional team and the use of specialized drugs. Since the diagnosis of this disease, Yanyan has been receiving treatment and has been abroad. However, due to age, drugs, disease types and other reasons, he was moved to many well-known general hospitals in China. He has not been able to find a cure for this kind of disease. A hospital that can provide medicines for diseases. It wasn’t until I learned through various channels that Zhejiang University Nursing Home was OK, not far away.
Yanyan is only one of many patients with mucopolysaccharidosis, and mucopolysaccharidosis is only one of many rare diseases. Professor Zou Chaochun, chief physician of the Endocrinology Department of the Children’s Hospital of Zhejiang University and deputy head of the Rare Disease Group of the Pediatrics Branch of the Chinese Medical Association, introduced that there are many types of rare diseases. There are currently more than 7,000 rare diseases known worldwide, accounting for about 10% of human diseases. %. The Children’s Hospital of Zhejiang University has received many rare and genetic disease cases such as spinal muscular atrophy, Williams syndrome, Angleman syndrome, Prader-Willi syndrome, and hereditary hyperlipidemia.
80% of hereditary rare diseases develop in childhood, and their treatment generally lasts from childhood to adulthood, requiring targeted and individualized treatment programs. But after they reach the age of 18, their treatment has to be transferred to an adult hospital. But the reality is that most adult hospitals lack treatment experience for rare diseases that occur in childhood. “Pediatricians have a more comprehensive understanding of diseases, diagnosis and treatment are more professional. We will do our best to diagnose and treat adult patients with special diseases like other children.” Zou Chaochun introduced, Zhejiang University Children’s Hospital for patients with special diseases over 18 years old Continuing the diagnosis and treatment services can effectively solve the medical problems of these special patients.
Dong Guanping, director of the Endocrinology Department of the Children’s Hospital of Zhejiang University, said that there are still many patients who need long-term treatment like Yanyan. Blood glucose clinic, calcium and phosphorus metabolism clinic, adrenal gland disease clinic, pituitary disease clinic, rare disease clinic, sexual dysplasia multidisciplinary joint clinic and growth and development clinic, as well as diabetes, congenital adrenal hyperplasia (CAH), pituitary The chronic disease management team for diseases, sexual developmental abnormalities (DSD) diseases and other diseases provides patients with continuous, high-quality, and personalized medical services, and actively assists hospitals to break through age barriers, and strive for continued diagnosis and treatment services for patients over 18 years of age with special diseases.
These childhood diseases also require continuous treatment
In addition to some rare diseases, there are many special diseases in children that require multiple treatments and even last for life. For example, children with type 1 diabetes, congenital growth hormone deficiency, abnormal sexual development and other genetic metabolic diseases. In addition, there are childhood leukemia, and congenital heart disease that requires staged surgery.
For example, it usually takes 2 to 3 years to complete the entire course of treatment for childhood leukemia. Therefore, some older children diagnosed with leukemia at the age of fifteen or sixteen face a dilemma: If you choose a children’s hospital, follow the scope of the original pediatrician’s practice. It is stipulated that it is unsustainable at the age of 18, and you must go to an adult hospital to continue treatment; if you choose a general hospital, most general hospitals use adult treatment programs to treat leukemia. A large number of studies have proved that the therapeutic effect of adult children with adolescent leukemia will be significantly lower than that of children. Older children’s leukemia has obvious advantages in the treatment of children’s hospitals. “Children are treated in the Children’s Hospital and continue to be treated in the Children’s Hospital after the age of 18, which is conducive to parents’ trust in doctors and good compliance with treatment, and it is more conducive to the radical cure of children’s diseases and physical and mental health.” Professor Tang Yongmin, Department of Hematology and Oncology, Children’s Hospital of Zhejiang University said.
At present, congenital heart disease that requires staged surgery is also relaxing the age limit. Li Jianhua, director of the Department of Cardiac Surgery at the Children’s Hospital of Zhejiang University, said that children with congenital heart disease have undergone surgical treatment in childhood, and most of them are cured without further treatment. However, a small number of children with congenital heart require staged surgery. After some operations, the heart valve becomes dysfunctional or outflow tract stenosis as the age grows and needs to be operated again to repair the valve and clear the outflow tract. If the original operation team doctors perform the operation, they will have a better understanding of the child’s condition and the entire process of the original operation, which will help the patient’s recovery. Therefore, the management of congenital heart disease in the whole life cycle that we advocate now is this new concept. A team of doctors will diagnose and treat this congenital heart disease patient for life, so that the patient will get the most benefit.