Battle for Life: India’s First Harlequin Baby dies after 48-hour struggle in Nagpur

• Newborn babies affected with harlequin ichthyosis are covered with plates of thick skin that crack and split apart
• This rare condition occurs if both the parents carry recessive genes of Harlequin
• The longest period of time anyone with this condition has survived is a girl from Pakistan, who passed away at the age of 24

NAGPUR: In an unfortunate incident in Amravati in the Vidharba region of Maharashtra, a Harlequin baby was born to a farmer's couple on Saturday, June 11. The news has received wide publicity in several major dailies of India.

Harlequin ichthyosis is a very rare disease, reported to occur once in every 300,000 thousand babies. According to Hindustan Times, Dr. Avinash Banait, who delivered the baby, said: "Harlequin ichthyosis is a very rare severe genetic skin disease. In such cases, the child's whole body is encased in an 'armor' of thick white plates of skin, separated with deep cracks. In addition, the eyes, ears, private parts and the appendages may be abnormally contracted."

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Infections can be easily caught as the external skin is never fully developed and internal organs are largely exposed to the outside atmosphere. Constant care is required to keep the baby's body moisturized. In their case, the doctors used petroleum jelly to moisturize the baby's skin.

Usually, doctors can identify this condition within four months of pregnancy through a 3-D ultrasound and advise the parents to terminate the fetus.

Newborn babies affected with harlequin ichthyosis are covered with plates of thick skin that crack and split apart. The thick skin plates can pull at and distort the infant's facial features. The tightness of the skin pulls around the eyes and mouth, forcing the eyelids and lips to turn inside out, revealing the red inner linings.

In the case of the farmer's baby, there were no ears and only slits in place of eyes. It was covered in thick scales and weighed around 1.8kg at the time of birth, said the Nagpur Times report.

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This rare condition occurs if both the parents carry recessive genes of Harlequin. Recessive genes mean that the trait is carried by the parents, but not shown physically.

The mother was not allowed to see the baby until two days later. When presented with her child on the second day, in the presence of a psychologist, she reportedly broke down.

The baby passed away two days later on Monday, June 13, in the afternoon. It is the first recorded case of Harlequin ichthyosis in India. The longest period of time anyone with this condition has survived is a girl from Pakistan, who passed away at the age of 24.

-Adapted and prepared from various sources by NewsGram staff with assistance by Saurabh Bodas, an intern at NewsGram.

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