I was curious if anyone out there has lost a fetus or newborn with a combination of these three birth defects-tetralogy of fallot, esophageal atresia, and dandy walker syndrome? They say my little guy may have created a new syndrome, because they have had cases of genetic disorders with two of the combined defects, but not all three. All of our genetic and chromosonal testing came back normal on my husband, myself, and our infant. He didn't survive his brain shunt surgery and died 5 days after birth. I am wondering if I am alone in this situation or if anyone else out there had this happen to them as well??? They suggested termination, which we couldn't do, and the farther along in the pregnancy, the better the prognosis became so we were very hopeful. Two brain specialists seemed to disagree on what they saw in neonatal brain mri's, and obviously the one doing the surgery was incorrect. They even disagreed on whether it was dandy walker syndrome because one felt his corpus collosum was fully developed. The surgeon that performed the surgery wouldn't speak with us even after weeks of his passing, and we were torn as to what to do. We never pursued it any further, hoping our healing would go faster. Now 2 years later I still have questions and doubts. Our second son was born perfectly healthy and we are very fortunate. Part of me feels like I could help someone else, and would also like to feel like we aren't alone in this type of birth.Reply Follow This Thread Stop Following This Thread Flag this Discussion
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