Metabolic

Over 75,000 children were examined for birth defects in Sindh in 18 months

Since the Sindh Newborn Screening Act 2013 was promulgated, around 75,000 children in Sindh have been screened for congenital hypothyroidism for free or free in the past year and a half.

Of these children, 45 were born with hypothyroidism. With timely diagnosis and treatment, these children are protected from being mentally retarded and suffering from other lifelong illnesses, experts and officials said on Friday.

“Congenital hypothyroidism is a condition in which a newborn baby is born without the ability to produce normal amounts of thyroid hormones. The condition affects about 1 in 3,000 to 4,000 children. It causes impaired neurological function, stunted growth and physical deformities, ”said Prof. Dr. Jamal Raza, newly appointed executive director of the Sindh Institute of Child Health and Neonatology (SICHN), speaking to The News.

He said the Sindh Assembly passed the bill in 2013 requiring all health facilities in the province to screen newborns for congenital metabolic disorders, birth defects and other diseases, but implementation of the law began in January 2020 when screening of Newborns for congenital hypothyroidism started at the National Institute of Child Health (NICH) Karachi.

“Among the 75,000 children examined by our experts at NICH, we found 2,200 suspicious infants who may have congenital hypothyroidism. When we started calling them we found that 170 had already died so we could only speak to 2,030 of them. Unfortunately, only 700 of them responded to our calls and signed up for a confirmation test, ”said Prof. Raza.

He regretted that due to a lack of awareness among parents, around 40 percent of parents refused to have their children retested for congenital hypothyroidism on the grounds that there was nothing right with their children. He added that they are now trying to raise awareness among parents that their newborns will be screened and treated if they have a congenital, metabolic or hereditary condition.

In response to a request, Prof. Raza said the Sindh government had allocated 200 million rupees to a three-year project for mandatory screening of newborns and the NICH team was coordinating with the PPHI, the Indus Health Network and the HIS who sent them blood samples from Newborns for mandatory screening for congenital hypothyroidism.

“Right now, newborns are only screened for congenital hypothyroidism, but in the coming days we can screen them for 30-40 different congenital disorders and diseases. Screening for congenital hypothyroidism costs between Rs 1,600 and Rs 2,700 in the private sector, but we do it for free in the NICH. “

Prof. Raza said that under the Newborn Screening Act, with the support of the National Institute of Child Health and other government agencies, professional societies and non-governmental organizations, the government should encourage the dissemination of objective information and educational materials on newborn screening. and may, by notification in the Official Gazette, publish such instructions, guidelines or guidelines as may be deemed necessary or appropriate for the preparation and distribution of information and educational materials.

Likewise, a doctor who delivers a newborn or assists with delivery should inform parents or guardians of the availability, type, and benefits of newborn screening prior to delivery.

“According to this law, the newborn screening should be carried out after 24 hours of life, but no later than three days after the newborn has been completely delivered. A newborn baby placed in intensive care to ensure survival is exempt from the condition for three days, but must be tested by seven days of age and is the shared responsibility of the parent and the doctor or other person who gives birth to the newborn to ensure that newborn screening has been done. A corresponding information brochure for parents to support them in fulfilling this responsibility is to be made available, ”added Prof. Raza.

“On the other hand, the law allows parents or guardians to refuse the test based on religious beliefs, but must confirm their understanding in writing, as such refusal puts the newborn at risk of undiagnosed hereditary diseases. A copy of the rejection documentation is included in the newborn’s medical record. “

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