Support Emmett’s Fight

Emmett was born 9/20/23 with severe Ebstein’s Anomaly. His first open-heart surgery was at 5 weeks old, where a cone procedure failed, leading to the Starnes Procedure and BT Shunt, making him a single-ventricle kiddo. He was later diagnosed with Abernethy Malformation, a rare liver condition. After significant challenges, he was weaned off medications and oxygen support and made his way to TCU status! He had a pre-Glenn cath procedure and then the Glenn procedure on April 1, 2024. Although the surgery went well, he faced setbacks, including breathing issues that required intubation. He never truly recovered and had a cath lab procedure on April 23, 2024 to coil collateral vessels and he slowly made progress. Eventually though Emmett’s respiratory status deteriorated and he is back on a bi-pap interface on the ventilator. He has more collateral vessels that need coiled and a very small airway. The team believes at this time a transfer to Pittsburgh Children’s would be best for him. Pittsburgh has a specialist in Ebstein's anomaly who created the cone procedure.

On 6/20/24 Emmett was officially accepted by a physician in Pittsburgh. Pittsburgh Children's Hospital is one of the only hospitals in America who will accept Emmett as a 1-ventricle kiddo with intentions of doing a cone-procedure, which would make him a double-ventricle kid again! If the cone-procedure is successful this could mean Emmett may never need a heart transplant. On 6/28/24 everything was officially approved and the transfer was in the hands of Pittsburgh. We were told on 7/1/24 that Pittsburgh would be reaching out to advise us when they will transport Emmett. On 7/2/24 Pittsburgh had a meeting and decided that despite everything being approved, that they no longer choose to work with Emmett’s insurance. We were told previously this would not be an issue, as they have worked with Illinois Medicaid before. Emmett has Meridian (Illinois Medicaid) and our only hope is to reapply and pray Emmett qualifies for a program that helps get kids the insurance they need and that Emmett can get an insurance Pittsburgh will work with, this process can take anywhere around 6 weeks! On 7/3/24 we have started the process with insurance but this takes time that Emmett doesn’t have!

Emmett needs to get to Pittsburgh, if he stays a 1-ventricle kid, Emmett will need a transplant, which for him is nearly impossible to have approved, due to his liver and lung issues. If Emmett stays in St. Louis and continues down this road of a transplant, he will end up on hospice and we can’t say goodbye to our sweet boy. Pittsburgh is Emmett’s only hope. Emmett deserves this procedure, he deserves to live many years to come. Please help us get our boy the life-saving care in Pittsburgh that he deserves. Any money used from this fundraiser will be used towards getting Emmett to Pittsburgh and getting him the cone-procedure to save his life. A medical flight equipped for Emmett with the special equipment and staff he needs will be at minimum $20,000 should insurance deny him. This will not include any additional charges, hospital stay, travel expenses, etc. truly anything helps!

Thank you so much for all your support and reading about our sweet guy!To follow his journey check out Emmett’s Cardiac Quest on Facebook❤️