Introduce new born screening, prevent a disability or death of a child in Kenya

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What started as normal ailments later saw my two children sink into intellectual disability. Autism was the name given after assessment. Recurring seizures led to epilepsy diagnosis and we kept administering the medication but attacks seemed to escalate. At age 14 and 8, both the boy and girl( George and Angel) are still non-verbal, hyperactive, yet to attain their ADLs and are fully dependent.

In year 2016 we took them to in India and PKU was diagnosed as the health condition afflicting them. Due to late diagnosis, little hope was given. PKU, together with other diseases and disorders or inborn errors of metabolism is best tamed if detected through newborn screening at the neonatal stage.

What is neo-natal screening and what does it entail? Newborn Screening comprises of (1) Blood Screening (2) Hearing Screening (3) Heart Screening


Within the first early hours/days into neonatal, after screening a drop of blood obtained by a simple pricking of the baby’s heel, the parents will get either of the following advice from the attending doctor:

"Congratulations on your cute baby. The new born screening results detected no future health alarm in your child with regard to various diseases and conditions under our core panel"

or

" Congratulations on your cute baby. The new born screening results indicated that your child, at either under one year, below five years, at adolescent stage or even in early adult life may very likely have a disease or condition called x posing a serious health challenge. However this test result and the subsequent action will enable us arrest that possible consequence."

Depending on the diseases and conditions that as a country we identify and put under a screening panel, right from day one and when the baby is healthy, a parent will know whether their child is a prime candidate of PKU, Sickle Cell Anaemia, Maple Syrup Urine Disease, Congenital microcephaly, Congenital adrenal hyperplasia, Congenital hyperthyroidism, Homocystinuria, Diseases of organic Acidemia, Diseases of fatty acid oxidation, Cystic Fibrosis, Galactosemia and many other diseases. These diseases do not manifest until later in life and mostly require unique technology to detect. They initially mimic common ailments with the display of normal symptoms like fever, respiratory distress, jaundice, lethargy, irritability, anorexia (appetite loss), excess vomiting etc with seizures, failure to thrive and intellectual disabilities appearing at advanced stages when the damage is greatly irreversible. A single test called Tandem Mass Spectrometry on just a drop of blood will catch either of these and more conditions right from the time the baby is few hours old. We need this test here in Kenya. It is possible. As a part of this newborn screening, every newborn should also undergo a Hearing Screening Test to ensure no hearing complications then or later in life. Every baby is also supposed to have heart screening using available and simple technologies to arrest early diseases like Critical Congenital Heart disease. No more misdiagnosis and costly ‘blind targeting’ with regrettable outcomes at times. Polio used to paralyze our society breeding several disabilities, some of which we still see today on clutches and wheelchairs everywhere. When consequences hit our society, today polio vaccine is mandatory and for free right from the child’s birth and at other times of need as determined by the government. With this alone, we are about to kick polio and the resultant disabilities away from of our society. The same should be the case with these Amino acid and Organic Acid metabolism disorders , Fatty acid oxidation disorders,Hemoglobin disorders, Endocrine disorders etc.

 

 



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