Children with PKU needs more social support: Expert

China has about 1, 000 to 1, 200 newborn babies suffering Phenylketonuria (PKU) syndrome, but few can access timely treatment as recommended before three months old, according to a senior women and children's health specialist.

Guests unveil the charity program providing free phenylalanine-free milk powder for newborns in Beijing.

Zhu Jun, director of a national office responsible for supervising women and children's health under the National Health and Family Planning Commission, made remarks at a charity event held jointly by the commission and Mead Johnson Nutrition (China) Co, Ltd.

The infant formula producer, under a charity program launched together with the commission, will provide free phenylalanine-free milk powder for 200 newborns with PKU for three years.

PKU is an inborn error of metabolism involving impaired metabolism of the amino acid phenylalanine. Protein-rich foods or the sweetener aspartame can act as poisons for people with PKU, so the sufferers have to have a special phenylalanine-free diet.

Untreated PKU can lead to intellectual disability, seizures, and other serious medical problems. The best proven treatment for PKU patients is a strict phenylalanine-restricted diet supplemented by a medical formula containing amino acids and other nutrients.

Zhu Jun revealed many of China's PKU children cannot access treatment before three months old, and thus suffered conditions like intellectual disability.

Screening for PKU is usually scheduled after the child is born and some parents might skip that due to practical difficulty like long distance commuting between home and hospital and the costs incurred, she explained.

To redress the situation, Zhu urge for improved social support and public health education.

China launched newborn screening program for birth defects including PKU in 1981 and to date it can cover 94 percent of the newborns, statistics from the Ministry of Health and Family Planning Commission showed.