Huda Ali

Huda Ali

Pakistan

My name is Huda Ali and im a mother of a seven months old baby girl, my daughter is a ‘crystal baby’ for she is suffering from a rare kind of deficiency. Yes she is diagnosed with Factor A deficiency which happens to 1 in a billion children.
She came into my arms in Pakistan and surpassed mixed feelings of excitement and joy. I got discharged on the 3rd day of delivery and Oh I was so relieved to be back home with my baby but same day in the afternoon I noticed a blood spot on her clothes and I thought its my breast that is bleeding, there was nothing like that, I removed her swaddle and all I could see was BLOOD exploding out of her amblical cord.. It was discovered there that she has a deficiency of white blood cells and as a treatment Fresh Frozen Plasma were being induced in her body for a week and she got well after that and so I was grinning because my baby was happy.
She got vaccinated twice and it was her third vaccination which change my routine up side down, my day and night were passing dealing with her crying spells and lethargic behavior, I took her to a clinic and they prescribed medicine for Colic Pain she got fine for a day and the next day she was same.. It was the fifth day I realised her thigh is swollen (same thigh she got vaccinated) and then I almost fainted seeing that she’s not moving her leg. I rushed to the hospital and they told me that there’s a clotting of blood in her thigh and they will have to do a surgery or she might loose her leg.. Left with no option I agreed to sign the papers before she could undergo surgery.. While they were preparing for surgery, they had to take her blood sample for complications that might occur and that was the might it was bombarded on me that my daughter is a patient of Heamophilia and then obviously they decided not to got the surgery because she will have bleeding issues for sure so they rather transfused cryoprecipitates in her body and being a novice with the term Heamophilia I took a lot of the time of the doctors to understand what my child is going through.. Obviously she’s the only child in the family who’s suffering from such a disorder.. Anyway doctors explained it to me that this is hypofibronogema and after getting treated in intensive care unit she got discharged.. Doctors told me every possible caution that I had to take while carrying her or keeping an eye on her activities I became over protected about her but there’s was still something left that my child had to bear that within 20 days she was admitted to the hospital once again and this time with Intracranial Bleeding and there she was again in my arms once again in pain, motionless and lethargic.. and this time finally I got to know that its not hypofibronogema but Afibronegema and that the only cure to this deficiency is weekly transfusion.. Knowing about the lifelong treatment doctors had put a Port a cath inside her body to prevent the pain of finding nerves every single time
Although she’s doing well with the treatment but being a mother I can see her long durable painful menstrual cycles and major issues in pregnancies and alot of miscarriages..
It was very difficult for me to pendown my heartfelt but I did for the sake of other children and with a positive hope that some treatment might be generated in the near future that will be enough to cure such rare deficiencies as my child is goung through..

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Huda Ali

Pakistan

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