Hospital Refusing To Help Child With Rare Heart Condition Because Of Insurance

Information directly from the child's family (they've given the public permission to share)

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!

Does ANYONE have any advice to help Emmett get the help he needs? Any and all help is appreciated.

submitted by /u/mamadoedawn
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