The Decision

On Wednesday, December 31st, 2014 we went for an echocardiogram and consultation with Dr. Kavita Sharma, a cardiologist at Children’s Medical Center Dallas. We had our appointment at 8 in the morning and it lasted until 11:30. We ended up meeting with 5 people during our visit: the echo specialist, cardiologist, nurse practitioner safe-at-home planner, hospital coordinator, and social worker. We started with an hour long echocardiogram that was finished up by our cardiologist. They seemed very detailed during the echo. After that, we met with Dr. Sharma so that she could explain our baby’s situation and surgical plan. We were very impressed with all of the details she shared and she was very easy to talk to and understand. She was extremely knowledgeable about HLHS and the specific condition of our son. Dr. Sharma was comforting but at the same time, she let us know the seriousness of the situation. We soon realized that our baby’s situation was a lot more critical than we had been told. The decompression vein we thought was a huge plus for our baby will not make a huge difference once he is born. This only formed due to the amount of pressure in the heart and lungs. Because of the pressure build up, an intact atrial septum, and not having a left ventricle, the heart and lungs will be under a lot of stress when he is born. Also, this has caused the pulmonary veins to thicken and swell. In conclusion, we learned that his situation is a bit more complicated than just a normal diagnosis of HLHS. We realize now that we can’t rely just on success rates because our situation is very unique. It was really hard hearing all of these details, but we were grateful to hear the actuality of our son’s condition. Dr. Sharma also answered the question that had been on our minds since meeting with Dr. Mendeloff and Dr. Forbess…should we do the Norwood procedure right away or should we do the pulmonary artery bands with the Norwood procedure done a few days later? We feel very confident after hearing her detailed explanation of the bands that waiting to have the Norwood would give our son more strength to handle open heart surgery. Our scheduler also had us meet with the safe-at-home nurse. She would be the person that would train us on how to care for our baby once he leaves the hospital. They showed us the binder we will receive that contains 10 sections on how to care for him, information about his specific condition, and logs for feedings and weight gain, etc. A hospital social worker then came to talk to us about sibling support and help we can receive while he is in the Cardiac ICU. We were told his stay should be around 6-8 weeks based on his condition. My husband and I would like to mention how wonderful the office staff was at Children’s also. They helped entertain our 16 month old son, Lucas, while we met with everyone. They gave him toys, showed him the model trains, and even blew bubbles with him. He left there with a huge smile on his face and waved bye to all of the sweet ladies there! The whole fetal cardiology team was on top of every detail…we were so impressed that they had set up all of these meetings when we had just scheduled the appointment 2 days before! With all this being said, we’ve made our decision. Our son, James will be cared for at Children’s Medical Center Dallas. We have total faith in them! A huge weight has been lifted off our shoulders.