Feb. 11-CHD Awareness- Braden's Story

Braden was born December 7th, 2009. He was diagnosed in utero with Coarctation of the Aorta (CoA). After he was born, things seemed to improve and we were sent home from the birthing hospital. Two days later, December 14th, we saw our pediatrician for a routine check-up. Dr. Setia discovered Braden had no palpable pulses in his legs and we were immediately sent to Dr. Videlefsky’s office. Once arriving there, an Echocardiogram and EKG were performed. Braden was then transferred to Children’s Healthcare of Atlanta at Egleston. We handed over our perfect, beautiful baby boy. A few hours later, we were allowed back into the Cardiac Intensive Care Unit (CICU) to see him. He looked so pitiful. He was hooked up to so many machines and had IVs and oxygen. It was absolutely unreal to see him that way. We were told the Coarctation of the Aorta was present and they would be performing surgery. On December 16th, at 9 days old, Braden had his first heart surgery. They separated his ribcage and entered below his shoulder blade. The CoA was repaired. The surgeon also discovered Braden had a Hypoplastic Aortic Arch. They did a left subclavian artery flap to repair it. He struggled post-op and remained on the ventilator longer than we expected. Once it was removed, he drastically declined and they had to reinsert it. Finally, on December 23rd, we were able to take our precious baby home, just in time for Christmas. He was too weak to suck a bottle so he came home with a Nasogastric tube for feeding. Unfortunately, on January 4th, Braden began to drastically decline and we rushed him into CHOA. Pressures in Braden’s lungs had changed and it revealed several VSDs in his heart also known as Swiss Cheese VSDs. He underwent his second heart surgery on January 12th, 2010. The surgeon placed a Pulmonary Artery band to help slow the blood flow to his lungs. After struggling yet again to come off the ventilator, and needing to be re-intubated, we finally returned home on January 19th. Sadly, our stay at home was short lived. Something was not right with Braden. We made several trips into the ER for respiratory distress. Braden was once again readmitted to the hospital. After staying for a week, it was discovered that Braden was micro-aspirating. He was aspirating everything he ate, along with reflux. On March 11th, 2010, Braden underwent his 3rd surgery. He had a Nissen Fundoplication and a G-tube inserted. He finally came home, but was on oxygen due to issues with his pulse ox after all the damage that was caused to his lungs. We continued to follow up with our cardiologist, pulmonologist and Gastroenterologist. Braden had several hospital admissions from his discharge in March until July. In July 2010, Braden underwent a heart cath to check things over. We were very blessed to have been able to avoid the hospital from August-November .Braden finally was strong enough and was removed for Oxygen in November. In December 2010, Braden had a heart cath done. It revealed that the Pulmonary Artery Band was ready to be removed. On January 11th, 2011, Braden underwent his 3rd heart surgery and 4th overall surgery. The Pulmonary Artery band was removed, an ASD was closed and approximately 6 VSDs were closed as well. There was some damage done to his heart in the form of dilation and thickening of the heart muscles. It was thought to be related to the Pulmonary Artery banding and we were optimistic it would slowly improve as time went on. We continued to follow up with our doctors, mainly Cardiology. In April 2012, a heart cath was done. It showed signs of (RCM) Restrictive Cardiomyopathy but no official diagnosis was made. We didn’t get discouraged and continued following up with the cardiologist. In July, 2012, Dr. Videlefsky recommended we make a visit to Dr. Mahle, Egleston’s Transplant doctor. Our lives changed in a way they had never changed before. Dr. Mahle not only confirmed the diagnosis of RCM, but told us our only option for Braden would be transplant. Thankfully Braden remains stable so they are able to hold off and not list him yet. We ask for prayers to keep our son stable as long as possible. The doctors are projecting that Braden will be listed and possibly transplanted within the next three years. Nothing is a guarantee. He could decline tomorrow and need to be listed. Every day with him is a blessing.