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Sun, 22 Jul 2018

Northeast Today

After Roona Begum in Tripura, Another Hydrocephalus Case in Manipur

After Roona Begum in Tripura, Another Hydrocephalus Case in Manipur
August 06
21:09 2017

By Kaybie Chongloi

People around the world will definitely recollect many etched account when Roona Begum name is mentioned, though the poor lovely girl had recently left the world with abundant tear-filled memories during her very short life of five years on earth.

Roona Begum was the only daughter of a poor couple, Abdul Rahman and Fatima Begum of Jirania Khola village in Tripura, who was born with a potentially fatal disease, hydrocephalus that causes cerebrospinal fluid to build up on the brain.

The poor little girl with her head twice as big as normal size living with her impoverished parents hit headlines in 2013 after pictures of her rare condition photograph by an AFP Photographer were published and made another headlines around the world after she passed away recently in June 2017.

Hydrocephalus is a rare condition where the cerebrospinal fluid accumulates in the brain, causing extreme swelling and a buildup of pressure. It is more common among infants and older adults. The condition is caused by overproduction, obstruction or lack of absorption of the cerebral fluid in the brain.

Pretty Roona’s plight attracted international sympathy which prompted the Fortis Memorial Research Institute, New Delhi to treat her rare condition for free since 2013 while numerous well-wishers had step forward offering donations, including two Norwegian students Natalie Krantz and Jonas Borchgrevink who put Roona’s photo on a crowd funding website and raised more than $60,000.

Poor little Roona fought extremely hard and her parents had her around for five and a half years but sadly, she was not able to overcome all the difficult obstacles that were facing her and passed away in June 2017 in her remote village in India after complaining of breathlessness.

Over the years, the world has watched a 5-year-old’s journey living with a head more than twice as big as a normal head hoping for her completely recovery and live a reasonably normal life.

Barely two months after Roona Begum expired in June 2017, another Roona Begum has been discovered in the remote village of Govajang bordering India and Myanmar under the newly created Tengnoupal District in Manipur with similar condition, similar head size and similar family background but of opposite gender.

Manipur-born Roona Begum is a 6 month old toddler identified as Seiminsang Kipgen, whom his parents fondly called him Mimin, who suffered the same Hydrocephalus which caused extreme swelling on his head which her mother discovered for the first time when the little boy attained one month.

Mimin Kipgen Manipur

Govajang village is located around 3 Km. from the border town of Moreh in the border area of India and Myanmar. There are around 25-30 houses in the village with a population of not more than 300 who has no main source of livelihood, mainly depend on their own daily labour. The daily wages is approximately Rs. 250/- only.

There is no pucca road connectivity with the village. The only road connecting the village with the border town Moreh is a muddy road where Shaktiman and diesel auto are the only vehicle which could ply on the road.

The rare condition of poor little Mimin came to light when Genhison WhatsApp group along with local Journalist of Kangpokpi visited him on Friday, August 4 at his native village. The three member team of Genhison WhatsApp group was led by its group creator Robert Hekai Kipgen who donated a sum of Rs. 20,000/- to the poor family.

The rest of Mimin’s body could not keep up with his head’s growth. He could not crawl, sit up or roll over, and the skin of his head has stretched so far, it pulled his eyelids over his eyes and forced his eyes to recess deep into their sockets making it impossible for him to see properly.

Born on India’s prestigious Republic Day, the 26 January 2017, in the impoverished big family of Lhunkhomang Kipgen and Nengneithem Kipgen as the youngest sibling among the six children of his parents, Seiminsang alias Mimin Kipgen was healthy enough to weight 4 Kg. when he was born by caesarean.

Her eyes filled with tears, Mimin mother Nengneithem Kipgen narrated that when the poor little boy attained 1 month she brought him to a nearby Dispensary for immunization and came to know that the little boy weight 9 Kg. which make her astonished.

She said that I had all the other children in normal delivery but Mimin was delivered through caesarean before adding that I thought my poor little boy would change our little world…and change, it did.

“Day-by-day, his head started growing bigger, he would just lie in bed and tears always roll down from his eyes and it became very difficult for us to carry him and take him anywhere,” recalled Mimin’s mother Nengneithem Kipgen.

She also recalled that after five days of immunization, I brought him to Moreh Hospital and his weight shockingly increase to 11 Kg. which make us restless since then while wiping her tears said that with our little knowledge we have no means of doing much else.

Poor little Mimin weight 15 Kg. now. The rest of his body weight only 5 Kg. and his swelling head alone weight 10 Kg.

She also said that we have brought to Hospital several times in Moreh and Tamu Hospital in Myanmar but they advised us to take him in a better equipped Hospital for his further treatment which is beyond our affords.

With things looking grey on medical lines, hopes and wishes are not enough on the personal front. Lhunkhomang Kipgen, who earns less than Rs. 500 a day which barely able him to feed his family, said that ‘We are very poor and we were not in a position to arrange for all the treatment, so wait for a miracle to happen.

“My son must be in a lot of pain because his head is swelling and so heavy but I could still him smiling sometimes which makes me think that his cognitive functions might still be intact and relieve me for a moment”, said 43 years old Lhunkhomang Kipgen, who lives in a wooden plank hut type house with his family while looking at his son playing innocently with his hands.

He said that someone told me the common treatment of the son involve the surgical insertion of a mechanism to drain the accumulated fluid away from the brain which could cost a huge amount but what can an under matriculate labourers like me who earns not more than Rs. 500 a day do with such an expensive treatment.

Hugging her six months old son while breastfeeding him and patting his inflated skull, Nengneithem Kipgen said in a muffled voice, “I want him to live healthy and grow up educated with a bright future as both of us no less than illiterate and I don’t want him to be like us”.

The Republic Day boy with his oversized head become the centre of attention and his poor mother said, we have come across many embarrassed moment as he had such a big head that it is scary for people to see and comment him to be similar with an alien which indeed resemble.

However, much to the relief of us, Mimin has pulled through and it feels really good to see him wandering in a frenzied pace, which make him looks handsome and happy, though in fact he might feel extremely pain, Nengneithem Kipgen lamented.

With help from Manipur Government, Government of India, well-wishers, humble and generous big hospital, individuals, etc. the poor Manipur Roona Begum’s future could be change and the poor family envision of ‘Miracle’ could happen only with the help of the Governments and generous people across the globe.

It is also another big challenge for the Indian medical authority including the state medical departments more particularly the Fortis Memorial Research Institute, New Delhi and the world to once again fight and defeated the potentially fatal disease, if not success upon the Tripura-born Roona Begum, to the Manipur-born Roona Begum.


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