Wolfhirschhorn.org website has posted an update on the Amelia (Mia) Rivera case on its Facebook page. It includes the following. Of course this is one account -- that of Wolfhirschhorn.org representatives and the Riveras. It is good to hear that the family and hospital are actively working together. Louise
Over the weekend, a meeting took place between a number of the key leaders of the Children's Hospital of Philadelphia, the Riveras and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the Brick Walls posting. The meeting lasted a little over 90 minutes and the Riveras had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro-view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally-retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.
Mia and the Riveras are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her ongoing medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.