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One of the most important things is finding a team of doctors that know about these types of tumors and have had experience dealing with them. These tumors are exceptionally rare, so it is important to find specialists who know how to deal with this condition since it can have several complications, especially considering babies still in utero. The prenatal center at Children's Hospital of Philadelphia, Johns Hopkins Hospital, and Boston Children's Hospital are the leading experts in this condition. Having experienced specialists will be your strongest asset for fighting this. In addition, I encourage you to reach out to other families also affected by this condition. They can provide a unique point of view and guidance even if you don't know them well so you can feel you are not alone.