Editorial Comments on Genetic Counseling

As the adoptive parent of a child with spina bifida, and a child with SPD, and the biological parent of two children that were so generously passed the gene for celiac disease from yours truly…

The genetics discussion is one that has come up frequently in our life- in regards to adoption, you don’t always have all the genetic information (“So risky!” our friends would exclaim.) On the other hand, we did knowingly adopt a child with spina bifida, which I believe may have given us more of a sense of control of the situation, versus being surprised by the diagnosis of disability.  While we opted out of amnio for our biological children (I was afraid of the small risk of miscarriage), I do think it is helpful to have genetic counseling and information.  For our family, termination was never an option because of our faith.  However, I still would want to know everything possible about my unborn child (or everything that could be possible for my unborn child) because I like to be armed with information.  Parents that have genetic counseling and are aware that they may have a child with spina bifida, or any other birth defect, have the ability to do research before they are overwhelmed by a newborn.  That would be the time to study the best medical options for your child.  Connect with local support groups.  Mentally and physically prepare yourself for caring for your newborn once you are home and away from the security of the hospital.  Parents that decide to get genetic counseling aren’t necessarily discriminating against any future children that may possibly have a disability.  They are probably just trying to make the best, most informed decisions for their future family.

That’s why websites such as Lifestyle Accelerator exist.  We are here not only to encourage and help those already living a life affected by spina bifida; we’re also here to educate and inform those not familiar with the disability.  We’re here to be a provider of hope.

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