Help Braden fight RCM
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4 contributors
2 Years running
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Braden needs a heart transplant and has other disabilities. Funds are being raised to improve his quality of life so he can live as normally as possible and have access to everything he needs to improve everyday. Here is his story: Braden was ... More ...

Braden needs a heart transplant and has other disabilities. Funds are being raised to improve his quality of life so he can live as normally as possible and have access to everything he needs to improve everyday. Here is his 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, 2009, 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 Pediatric Cardiology Services, the office of Dr. Videlefsky’s office. Once arriving there, an Echocardiogram and EKG were performed. Dr. V confirmed our fears. Braden was then transferred to Children’s Healthcare of Atlanta at Egleston. We handed over our perfect, beautiful baby boy to the Cardiac Intensive Care Unit staff. A few hours later, we were allowed back into the 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. The CoA was repaired. The surgeon also discovered Braden had a Hypoplastic Aortic Arch. They did a left subclavian artery flap to repair it. This means Braden has no artery in his left arm, they told us his body would compensate for the loss. He struggled post-op and remained on the ventilator longer than we expected. Once it was removed, he drastically declined and they had to intubate him again. He slowly began to recover again and finally made it to the step down unit.

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 the majority of his feedings.

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 bits of everything he ate, along with reflux coming up from his stomach.

On March 11th, 2010, Braden underwent his 3rd surgery. He had a Nissen Fundoplication and a G-tube inserted. The Nissen Funoplicaton wraps the top of the stomach around the bottom of the esophagus to tighten things up so nothing can come up from the stomach. 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. He remained on oxygen for 9 months. 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 from Oxygen in November.

In December 2010, Braden had another heart cath. 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. As long as Braden remains stable, we can avoid the transplant list but at any time, he could decline. We aren't promised tomorrow so we live today!

We live each day holding our breath but try to enjoy every moment we can with him. 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 three years from when he was diagnosed. We have faith we can go much longer than that, but again, no one knows how long we have.

Along with the heart defects, Braden carries the clinical diagnosis of Noonan Syndrome. This was a spontaneous mutation within the genes. He also has hypotonia, reflux, has a feeding tube in his tummy, moderate speech delays, oral aversion and moderate sensory integration. If you ask him, he will tell you "I get a new heart" We try our best to help him understand so he isn't fearful during appointments and procedures.

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