Now, the number of children who require medical devices and medical care in daily life is increasing rapidly in local communities. The reasons are threefold. The first one is the transfer of these children from NICU to local communities.
In Japan it is a social problem, that because of long-term hospitalization in NICU, a new baby who need NICU care could not be admitted to NICU. More than one year stay in NICU is common. Sometimes two years or three years and I saw the case about ten years. The reason is that we can save more severe ill children but they need 24hour medical care.
Then more and more children with high medical dependence are transferred from NICU to local communities.
The second reason is the increase of transfer of the children who require medical devices and care from pediatric hospitals to local communities. Critical care medicine keeps advancing not only in neonatal medicine, but also in pediatric medicine.
The third reason is that children with severe mental and physical disabilities in local communities who initially don’t need medical care come to need medical care as they age. Children with severe illness who were born 20 to 30 yeas ago when the pediatric medical technology started developing didn’t require medical devices or care. But these children gradually lose their physical functions at a quicker rate than their parents, and soon come to need medical care like tracheostomy or tube feeding. Many of these children are supported only by their parents. Recently, there was sad news that a child with disability was found dead from starvation after the sudden death of the child’s families. These kinds of news will likely be increasing from now on.
Evaluating from the information I have the number of children under 15 years old who need medical care is over 48,360(forty eight thousand three hundred sixty) in Japan. Among them, the patients with ventilator are over 2,440(two thousand four hundred forty), the patients over 20 years old with severe mental and physical disabilities who need intensive medical care are around 4,000 in local communities. And these numbers are rising. But the government and Japan Pediatric Society do not have correct information.
Characteristics of children subject to home medical care of our clinic are as follow.
- High dependent on medical care
- Often need multiple medical devices
- Respiratory management like tracheostomy and airway care is important
- Clinical condition changes with development
- Difficult to detect physical abnormalities because communication is often challenging
- Need a 24-hours-a-day care and can’t stay away a minute.
It is very important that children high medical dependent would die if they were left alone for only five minutes. The parents have to keep staying with them truly 24hours.
- Need support to have various experiences for development