Logan was born June 8, 2010 with a very rare and very complex congenital heart disease called Heterotaxy Syndrome. We knew at 18 weeks in utero that something wasn’t right. After 3 excruciatingly long weeks and several misdiagnosis from perinatologists (high risk OB) we got a definitive diagnosis from Dr. Patel at Akron Children’s Hospital here in Ohio. Logan as half a heart. A normal heart has 4 chambers and for all intents-and-purposes Logan has only 2. His body only created the right ventricle and the right atriumvery early on in utero. His complete diagnosis is the following…
- Heterotaxy Syndrome/Right Isomerism
- Levocardia/Situs Solitus
- Double Outlet Right Ventricle-DORV
- Complete Atrioventricular Septal Defect-CAVC
- D. Transposed Great Arteries-DTGA
- Pulmonary Stenosis
- Supracardiac Total Anomulous Pulmonary Venous Return-non obstructed to right SVC – TAPVR
- Bilateral Superior Vena Cavas
- Absent Spleen -Asplenia
- Midline Liver
- Malrotated Intestines
We have since found (months later) that getting this complete diagnosis in utero in very uncommon. We got very lucky to have such a great cardiologist fall into our laps and I have never been so thankful for anything in my life. Having this complete diagnosis really helped us prepare and understand our son’s condition for months before he was born. Many parents do not get this luxury as many cardiologists are not able to make this full diagnosis in utero. I have told him this a thousand times but would just like to state it here one more time that we are ever thankful to our outstanding pediatric cardiologist Dr. C.R. Patel. I truly believe that having a prenatal diagnosis helped prepare not only us but also the doctors. I cannot thank this man enough for being so outstanding in his practice.
Logan was born at Akron Children’s hospital in Ohio, on a sunny day in June, via C-section. He weighed 6 lbs 4 oz. He spent the first 2 weeks of his life in the NICU. After that we took him home to try to get him as big and strong as we could before his first Open Heart Surgery. At about 4 months old Dr. Patel told us that Logan would not be able to wait for his scheduled OHS and that he would have to have it early because of problems with his one atrioventricular valve not functioning well. Within less then one week of finding this out we made our way to Boston Children’s Hospital where he underwent a Valve Repair, a Pulmonary Vein repair (TAPVR repair), and a Bi-Directional Glenn Shunt. We were told this was about as complex of a surgery that can be done on a baby, and that children with Heterotaxy are the ones with the highest mortality rate. He surprised everyone and did outstanding right out of surgery. We had a few set backs later in recovery and Logan spent a total of 4 weeks in the ICU. Logan is home now growing and getting stronger since his repair and we are awaiting his next Open Heart Surgery which will be in the fall of ’11, when he will have a surgery called the Fontan.