If you find you are a carrier of the SMA gene, it is necessary that you seek the advice of a Genetic Counselor. This counselor will assist biological parents to better understand the risks and chances of having another affected child. The Genetic Counselor will take a complete family history which will include any diseases, deaths, causes of death, still births and miscarriages of each family member. Using this information helps them to identify persons likely to carry a defective gene. Sometimes laboratory studies will follow.

 

The information presently available allows for prenatal testing with 98% reliability.

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The decision to have prenatal testing performed and the options available once the results of the testing are back can be difficult. These are individual decisions and very personal. It is important that both parents have discussed their feelings together and with their Genetic Counselor who will offer unbiased support in their decision. Often times a family may also wish to consult with their clergyman. Once a decision has been made, it is important to be supportive of one another and to allow any necessary time to grieve. This is a difficult decision, one that has taken great anguish and thought.

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Under no circumstances should you allow others values or judgement to affect you. Remember you are not alone. Families of SMA is only a phone call away.