My Name is Kristen and I am currently 35 weeks pregnant with a little baby boy diagnosed with Heterotaxy. I have decided to document this journey as a way of reaching out to others facing a CHD (Congenital Heart Diease) diagnosis. I will try to be brutally honest about the good, bad, and the ugly. If any of our experiences helps one family it would make this whole blog worth while.
A little background about myself. I am 30 years old and married to my best friend Scott for 5 years. We have one son together named Ethan and he is 1.5 years old right now. I also have two step daughters named Sarah (18) and Stephanie (13). We live in Ohio close to Cleveland. I am very lucky to be living where we are, we are 25 mn. from the Cleveland Clinic and Rainbow Babies Hospital, and Akron Children’s Hospital which are all wonderful Children’s hospitals. I just read in some magazine that the state of Ohio has the so many great Hospitals including great ones in Cincinnati and Columbus that it is the best state to be born in with serious medical conditions.
We had a series of fortunate events occur along with this devastating news. One being that, one of the leading experts on Heterotaxy is at Akron Children’s Hospital which is a 20 minute drive from our house. Dr. Patel is the one that diagonsed the condition and from what I understand a lot of children with Heterotaxy don’t get diagnosed in utero because it is a very hard diagnosis to make. The other fortunate event that has been a huge benefit in our life is that my parents relocated from Wisconson to 10 minutes from us just a couple of weeks before we got the diagnosis.