Javier’s Story

One of two twin boys, Javier was initially diagnosed with CDH at 15 weeks in utero in his home country of the Dominican Republic. Upon further evaluation in Miami it was recommended that Javier and his brother Manuel be delivered at Children’s Hospital of Philadelphia (CHOP). Javier’s mother Sara traveled to Philadelphia at 20 weeks for her initial evaluation with the team there, and then due to the risk of premature delivery associated with twins the entire family moved to Philadelphia at 28 weeks. They settled in away from their entire family for the long haul, rented apartment in the city and got a rental car so they could be at Javier’s bedside when the time came, and they waited.

On May 20, 2016 at 9:42 AM Javier and his brother Manuel were born via C-section at CHOP. The doctors immediately started mechanical ventilation for Javier, but for the next 11 hours Sara and her family watched his condition continue to decline until it reached the point where ECMO (What is ECMO?) was the only option to keep Javier alive. For the next 16 days ECMO took over for Javier’s circulatory and respiratory systems and let him gradually recover until he was finally stable enough for surgery to repair the hernia.

Javier was a champion during his surgery. Unfortunately, CDH is seemingly always two steps forward and one back and soon after needed to be put back a ventilator for another 27 days to alleviate the pressure on his tiny lungs while they continued to develop. He was then moved to a CPAP for 22 days, before finally breathing his first natural air a full two months after his birthday. Discharge seemed close, but nerves were tested again when it was discovered that Javier’s GI tract had suffered severe trauma that would require an additional surgery. A surgery he again knocked out like Iron Mike Tyson but that led to another 30 days of recovery in the NICU.

114 exhausting days after he was born, Javier, Sara, and the entire family were able to finally go home. They would do it all over again if they had to (they don’t), but they know that Javier is with them today because of his unbelievable will to live, and the tireless efforts of the extremely talented and loving staff of Children’s Hospital of Philadelphia. They know the fight is certainly not over and they continue to recover in all aspects of life from their 6-month hiatus, but they want Javier’s story to raise CDH awareness so that future babies and their families can have the same opportunity at life like Javier!

About the Fore Hadley Angels in the NICU Fund

Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Javier’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.

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Every item purchased makes a real difference. Proceeds from the sale of Fore Hadley apparel go to supporting children like Javier.