Mother of baby diagnosed with rare nervous system disorder looking on the brighter side
When one steps into the realm of being a mom, there isn’t a written manual or guide for how it will be and what to expect. There are tons of happy moments and of course there are some experiences that bring out frustration.
Yogeeta Chandrapaul, 24, of Cotton Tree, West Coast Berbice, has experienced them all. Her two-year-old baby girl, Natalia Douglas, was diagnosed with Porencephaly – an extremely rare disorder of the central nervous system in which a cyst or cavity filled with cerebrospinal fluid develops in the brain.
Medical documents seen by the News Room detailed that little Natalia has a “large porencephalic cyst.”
Chanrapaul, who also has an older daughter who recently started nursery school, said that doctors told her that her baby Natalia has less than 20% of a normal brain and if an operation is done, it could be fatal. And that is not a chance the young mother is willing to take.
“They [doctors] said surgeries were done on children with less than 25% brain and they don’t normally survive. So, they advise me to enjoy the most I can with her because it can be fatal at any time,” Yogeeta explained.
According to Chandrapaul, while there is still a glimmer of hope that maybe one day something can be done to save her baby, she also has accepted the medical advice of doctors here in Guyana, particularly neurosurgeon Dr. Amarnauth Dukhi.
The young mother chooses to enjoy every moment with baby Natalia and related that while it is difficult to see her daughter live her childhood being bound to a bed, she knows that her baby is strong and will live longer than expected.
“She lives a normal life without treatments because the doctors say no surgeries can be done because of how risky it is. At this point nothing can be done to help her but if there is anybody that would like to help her that is okay,” Yogeeta said.
Yogeeta who is a beneficiary of the government’s temporary employment program, notes that she gets to work at the community health centre not too far from her home. This allows her to still be close enough to check on her baby girl at no cost to her.
Chandrapaul said when her baby was born, she was normal but it wasn’t until she was two months old that she began seeing a change to the structure of her head. She took the baby girl to the Georgetown Public Hospital and following a series of scans and tests, little Natalia was diagnosed with porencephaly.
She has since quit the GPHC clinic and is now taking her to the Cotton Tree Health Centre Clinic.
The mother said having to take care of baby Natalia is not as difficult as it may seem.
She added that when she is at work, she gets assistance from her in-laws who take care of the baby during her work periods.
Yogeeta said that since her baby’s case went public about a year ago, she has been getting assistance in all forms.
She is open to assistance of any kind for her baby and if anyone wishes to do so, persons can make contact with her on 672-6663.