What is Heterotaxy?

Carolena has Heterotaxy Syndrome, a rare, complex and complicated make-up of organ defects that mostly affect her heart.  She was born with only half of a functioning heart which puts her in the category of single ventricle anomolies.  Although she is similar to children with Hypoplastic Left Heart Syndrome, she has other issues she must face that children with HLHS do not.  Our biggest challenge, outside of her single ventricle and not having a spleen, is that she started having deadly arrhythmias at 9 months old.  Fortunately, she is stable with medication and has not needed too much intervention.  The electrical issues are the scariest thing for us as we never know when they will strike and if she will respond to treatment.  We were well versed and prepared for a child with HLHS, not so much for a child with Heterotaxy Syndrome.  For more information here are some great links:

http://www.heterotaxy.org/Pages/what_is_heterotaxy.aspx

http://www.chop.edu/service/cardiac-center/heart-conditions/heterotaxy-syndrome.html