Baby Isaac's Special Heart

Our beautiful baby boy, Isaac Elias Rodriguez, was born prematurely at 36 weeks on October 16, 2015. He was diagnosed with two congenital defects in utero at around 23 weeks. After he was born, even more complications were discovered. He was diagnosed with heterotaxy syndrome, hemorrhaging in the brain, asplenic (without a spleen), bronchial stenosis, and needed to be intubated. Given the complexity of his case, it was very difficult to find a surgeon who would even consider looking at his medical chart to determine whether or not he would even be accepted as a patient. After contacting all major surgical teams within southern California, it was realized that we would need to extend our search outside local areas. Surgical teams located as far as the East were contacted. We were told by his neonatal and cardiac team who had been taking care of him since birth that we were coming to an end; that there had to be a time when we stopped looking for a surgeon. They began discussing comfort care with us. This was the worst, most horrific time of our lives. We cannot even begin to explain or describe the feelings that we had. But finally, almost a month of searching, we received the best news. Stanford, or Lucille Salter Packard Children's Hospital, had accepted him for further evaluation. We were repeatedly told by his neonatologists that he was not accepted for surgery, but that the team at Stanford wanted to evaluate him for themselves. We didnt care about how much it was going to cost us, if our insurance would even cover it, if they were going to evaluate him and then deny him as a patient then send him back to Orange County (which our insurance would not cover). We didn't care. We didn't care about being put down by the team taking care of him at Orange County, or by them telling us there were very little options for him. We were going to fight for our beautiful son no matter what. After spending one week at Stanford, the cardiac surgeon, Dr. Hanley, performed his first surgery: The BT Shunt, which was a complete success. We were so thankful and felt so blessed. Dr. Hanley was the one fighting for Isaac to be transported and evaluated to this facility, and we are beyond thankful for him. After the surgery, Isaac did so well that he was able to be extubated. This was so huge for us because he had been intubated since day of birth and we havent been able to see his beautiful face without it since. The week following, he was still having respiratory issues, though. They did further evaluation and discovered he his vocal cords were not functioning properly and that his epiglottis was abnormal. They performed a supraglottoplasty and injected the muscle surrounding one of his vocal cords to correct these issues. After having these procedures done, he was doing so well that the team at Stanford deemed him ready to be transported to CHOC for growth. We are still at the CHOC NICU. We are focusing on getting Isaac to grow for his second major open-heart surgery, the Glenn procedure, which will take place anywhere from 3 months of age to 6 or 7 months depending on the patient. We are also focusing on corrected his respiratory issues here at CHOC. Although he is no longer intubated, he still requires a high-flow nasal cannula. Once these issues are addressed and fixed, we can take our baby boy home for a short period of time before we take him back up to Stanford for his second surgery. He will certainly need a third major heart surgery around 2-3 years of age. As of right now, we cannot determine how many more surgeries he will require. All we know is that he will need a series of them. Baby Isaac is so, so strong. He's such a little fighter, and we know whatever battles comes his and our way, we will always win. We have so much love and support from not only people we know, but even so many we don't know. We cannot express how thankful we are to everyone from the bottom of our hearts, not just for financial support, but just for being there for us, for thinking about us, for loving us, for caring about us. Just know that we love you all.

- The parents, Jesse & Brittany

God Bless you, the Rodriguez, Choe and Valdez Families