Monday May 28, 2018

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

Harlequin ichthyosis is a very rare disease, reported to occur once in every 3,00,000 thousand babies

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A doctor holds India's first Harlequin baby at a hospital in Nagpur, Maharashtra.Punjabupdate/Twitter
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  • 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.

Harlequin
Harlequin fetus. Image source: Wikimedia comons

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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  • Vrushali Mahajan

    Doctors say, Harlequin affected babies should be aborted immediately as they have negligible chances of surviving. But as this baby was born in a farmer’s house, they couldn’t afford to get a check up done during pregnancy

  • Paras Vashisth

    This is an unknown disease.So for awareness,government should take some steps regarding this.

  • Vrushali Mahajan

    Doctors say, Harlequin affected babies should be aborted immediately as they have negligible chances of surviving. But as this baby was born in a farmer’s house, they couldn’t afford to get a check up done during pregnancy

  • Paras Vashisth

    This is an unknown disease.So for awareness,government should take some steps regarding this.

Next Story

Diesel Exhaust Converted Into Ink by Indian Innovators To Battle Air Pollution

Supervised by young engineers, workers at the start-up company Chakr Innovation in New Delhi cut and weld sheets of metal to make devices that will capture black plumes of smoke from diesel generators and convert it into ink.

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representational image. VOA

Supervised by young engineers, workers at the start-up company Chakr Innovation in New Delhi cut and weld sheets of metal to make devices that will capture black plumes of smoke from diesel generators and convert it into ink.

In a cabin, young engineers pore over drawings and hunch over computers as they explore more applications of the technology that they hope will aid progress in cleaning up the Indian capital’s toxic air – among the world’s dirtiest.

While the millions of cars that ply Delhi’s streets are usually blamed for the city’s deadly air pollution, another big culprit is the massive diesel generators used by industries and buildings to light up homes and offices during outages when power from the grid switches off – a frequent occurrence in summer. Installed in backyards and basements, they stay away from the public eye.

“Although vehicular emissions are the show stoppers, they are the ones which get the media attention, the silent polluters are the diesel generators,” says Arpit Dhupar, one of the three engineers who co-founded the start up.

The idea that this polluting smoke needs attention struck Dhupar three years ago as he sipped a glass of sugarcane juice at a roadside vendor and saw a wall blackened with the fumes of a diesel generator he was using.

It jolted him into joining with two others who co-founded the start-up to find a solution. Dhupar had experienced first hand the deadly impact of this pollution as he developed respiratory problems growing up in Delhi.

An Indian girls holds a banner during a protest against air pollution in New Delhi, India, Nov. 6, 2016.
An Indian girls holds a banner during a protest against air pollution in New Delhi, India, Nov. 6, 2016.

A new business

As the city’s dirty air becomes a serious health hazard for many citizens, it has turned into both a calling and a business opportunity for entrepreneurs looking at ways to improve air quality.

According to estimates, vehicles contribute 22 percent of the deadly PM 2.5 emissions in Delhi, while the share of diesel generators is about 15 percent. These emissions settle deep into the lungs, causing a host of respiratory problems.

After over two years of research and development, Chakr has begun selling devices to tap the diesel exhaust. They have been installed in 50 places, include public sector and private companies.

The technology involves cooling the exhaust in a “heat exchanger” where the tiny soot particles come together. These are then funneled into another chamber that captures 70 to 90 percent of the particulate matter. The carbon is isolated and converted into ink.

Among their first clients was one of the city’s top law firms, Jyoti Sagar Associates, which is housed in a building in Delhi’s business hub Gurgaon.

Making a contribution to minimizing the carbon footprint is a subject that is close to Sagar’s heart – his 32-year-old daughter has long suffered from the harmful effects of Delhi’s toxic air.

Motorists drive surrounded by smog, in New Delhi, India, Nov. 8, 2017.
Motorists drive surrounded by smog, in New Delhi, India, Nov. 8, 2017.

“This appealed to us straightaway, the technology is very impactful but is beautifully simple,” says Sagar. Since it could be retrofitted, it did not disrupt the day-to-day activities at the buzzing office. “Let’s be responsible. Let’s at least not leave behind a larger footprint of carbon. And if we can afford to control it, why not, it’s good for all,” he says.

At Chakr Innovation, cups, diaries and paper bags printed with the ink made from the exhaust serve as constant reminders of the amount of carbon emissions that would have escaped into the atmosphere.

There has been a lot of focus on improving Delhi’s air by reducing vehicular pollution and making more stringent norms for manufacturers, but the same has not happened for diesel generators. Although there are efforts to penalize businesses that dirty the atmosphere, this often prompts them to find ways to get around the norms.

Also Read: Exposure to Traffic-Related Pollution Poses Threat of Asthma in Kids

Tushar Mathur who joined the start up after working for ten years in the corporate sector feels converting smoke into ink is a viable solution. “Here is a technology which is completely sustainable, a win-win between businesses and environment,” says Mathur. (VOA)