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The Story of a Girl With Heterotaxy Syndrome |
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Thank you for visiting! This site was started to describe the events thus far in our daughter’s life. Brooke, born in the spring of 2002, has a condition called “heterotaxy syndrome” consisting of complex congenital heart disease, absence of the spleen, and malrotation of the bowel. Her heart problem consists of an AV canal defect, double outlet right ventricle (DORV), transposition of the great arteries (TGA), pulmonary atresia (PA), and dextrocardia. In addition to her heart problems, the asplenia, and malrotation (“fixed” with LADD’s procedure), she has a feeding disorder. So far she has had 3 heart surgeries (Blalock-Taussig Shunt-age-2 days; Hemi-Fontan-5 months; & Fontan-3 years), and 4 stomach surgeries (G-tube, fundoplication, lysis of adhesions, and re-do fundo/G-tube). She takes 2 heart medicines (aspirin and captopril) and an antibiotic daily (amoxicillin).
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Brooke’s Broken Heart |
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Brooke at 3 years |
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