Bilateral Cataract With Down Syndrome - Genetic Disorders FAQs

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Rakesh Kumar, Binay Ranjan, Manjul Vijay Department of Pediatrics, Katihar medical college, Katihar...

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Question
Respected Sir, My baby is having bilateral cataract with DOWN SYNDROME with CYNOTIC HEART DISEASE (complete AV canal defect severe ps = is+vsd+asd+hypoplastic pulmonay annulus). It is a difficult decision for me whether I should go for cardiac surgery or not. Her heart will require at least two open heart operations which will require big money as well as great risk & even after operation her life will be not of good quality. There are many down syndrome complication & cataract complication. I consulted rehabilitation school for down baby there advised is as under--"" Even if the child survives, it will remain custodial for life, adding unsurmountable financial, emotional, social and logistic burden to the parents with no hope of its ending till the child departs. This surgery will do little to add to the quality of life of the child. And impartially speaking, you do not have any quality of life to offer your child even after such herculean efforts since the child's brain cannot be revived, without which there is no quality of life. The life risk of such intricate surgeries is also exhorbitant. She is 8 weeks old now. And what is your advice considering all aspect of disease.This is a difficult decision.your guidance will help me. What should I do?IF I DECIDE TO GO FOR ALL OPERATIONS IT WILL CONSUME ALL MY MONEY & I WILL GIVE HER A DEPENDENT DISEASED LIFE. IF I DECIDE NOT TO GO FOR SURGERY I WILL REMAIN GUILTY CONSCIOUS ALL MY LIFE. Sundeep Nigam.
Answer
A child with Downs syndrome will not be able to perform as a child with normal intelligence however they are trainable and educable up to second standard. The heart disease is quite severe and one would really have to determine the outcome after surgery - how successful will the surgery be in improving the heart problem. The decision will be based on the success rate of the heart surgery. Back to All Questions

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