She holds the baby tightly against her chest, pressing her tiny hand against her very heart and pleads, “Mage babawa bera ganne udaw karanne.”
Repeating over and over again, the heart-rending plea to save her little one, the tears flow as 26-year-old Niluka Damayanthi’s pathetic life story comes out amidst the sobs.
Hesara Hansali is not yet six months old, born on January 20, this year, but has been in and out of hospital numerous times. The trauma that she has undergone in this short span is evident the moment a nurse walks into the room in Ward 3 where Hansali is snuggled up to her mother feeding contentedly. While the nurse is attempting to get the medication line ready to fix to the cannula on the tiny foot of the baby, Hansali turns, takes one look at her and begins crying and all her mother’s tender hushing cannot comfort her.
|Help us: Niluka with baby Hansali. Pic by Gemunu Wellage
Hansali is very ill and Niluka who is fearful for her tiny daughter’s life says, “She has been having high fever on and off since her birth but this time it has been the longest. We have been in hospital since June 18.”
Her fears are justified. Since her marriage to first cousin, K. Herby Senarath Perera, now 36, life has been full of sorrow and tragedy. The marriage was a happy one, having known him from childhood.
They are the children of a brother and sister. Settling down in a small home in Wewita, Herby was earning enough to keep the home fires burning by running a CD shop at Bandaragama. Fulfilment came when Niluka conceived but the couple were not destined for the joys of parenthood and she miscarried the first time. Within the next few years, she conceived again but lost that foetus as well.
However, in 2009, they were overjoyed when Himashi was born on June 26. Little did they know then that the inexorable reality of death following birth would have to be faced by them soon. The baby was dead before three months. Himashi had Leukocyte Adhesive Defect Type I which caused septicaemia and death from septic shock.
Desperate, the couple sought the advice of a doctor close to home and was told that although the chances of conceiving a baby with this genetic issue was 75%, they should go for the 25% chances of having a healthy baby. The yearning to have and to hold a babe was so great that they were willing to cling to that 25%.
Hansali was born at Sri Jayewardenepura Hospital, explains Niluka and although her birth weight was alright, soon after baba kaha wuna (became yellow) and had to be rushed to the Baby Room. “We took her home five days later and she was fine. ”Or was she? The couple were left in the depths of despair when they learnt that Hansali too had Leukocyte Adhesive Defect Type 1.
In and out of hospital, has been their plight since then and even when Niluka and the baby are home, they stay in the room to prevent the baby from catching an infection.
There is a defect in the neutrophil function of the baby, says Consultant Paediatrician Dr. Devan Mendis of the Lady Ridgeway Hospital for Children under whose care in Ward 3 Hansali is. Neutrophils are important in the defence mechanism of the body and this baby from a consanguineous marriage has a neutrophil adhesion defect which makes her vulnerable to certain infections particularly bacterial, he points out.
Going into more detail, a doctor attached to the Human Genetics Unit of the Colombo Medical Faculty says, Leucocyte Adhesion Deficiency is a disease affecting the function of white blood cells. Such patients who are more prone to infections due to lack of immunity, need early intervention, otherwise they can die in early infancy.
The doctors hold out only one hope for this couple and tiny baby – a bone marrow transplant, not available in Sri Lanka but in India………and for that they have to collect a minimum of Rs. 2.8 million which is way beyond their means.
Life’s cruelties are inexplicable for the couple who have been eking out a living and also meeting the added costs such as transport that hospitalization has brought, from their meagre earnings from the CD shop. “Our CD shop has been robbed twice in recent times and now the owners are threatening to increase the rent,” says Niluka.
But Niluka and Herby are adamant. “We will sell the small block of land with our home and beg and borrow,” says Niluka, pleading: Pinsiddawei mage babawa bera ganne udaw wunoth (Blessings will be showered if you help save my baby).
Give them a helping hand
Help save Hansali’s life by contributing what you can to Account No. 121-207-036896-1 at the People’s Bank, Bandaragama in the father’s name, K.H. Senarath Perera, or Account No. 1059-5001-8239 at the Sampath Bank, Bandaragama in the mother’s name, M.D.N. Damayanthi. Herby may be contacted on mobile: 0775033429.