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As we come to terms with our 16-month-old daughter needing to undergo long-term monitoring for tumor growth due to a rare condition called Beckwith-Wiedemann Syndrome (BWS), we look back on the past seven months and recall a roller coaster of emotions. It was the most frustrating and confusing time, trying to decipher discrepancies between what the hospital was telling us and what our insurance company was willing to cover, while at the same time trying to make the best decisions for our daughter’s care. Then we learned about the services available at ConnectCare3. This nurse navigation and patient advocacy service was made available to us through my husband’s place of employment.
After one conversation with a ConnectCare3 nurse navigator, we had a plethora of resources and a whole new level of clarity regarding how to move forward and what our options were to responsibly care for our daughter. We ultimately opted for care from another health system after our nurse navigator informed us of a doctor who specializes in working directly with hundreds of children with the same diagnosis as our daughter. This was about four months ago, and we are so very grateful for support from ConnectCare3 while we were coming to terms with everything and educating ourselves and moving forward to best care for our baby girl.
Our ConnectCare3 nurse navigator compiled a list of suggested questions to use as we met with our new doctor, which we relied upon heavily. We are certain those questions assisted us in obtaining the clarity we have regarding our daughter’s care plan. Today we are confident in the care she is receiving, respect her doctors and nurses, and have assurance regarding our understanding of the financial end of things as well.
We can’t say enough about how much of a blessing the services of ConnectCare3 have been to us! We would highly recommend them to anyone who needs clarity in finding quality medical care and assurance that you understand your options thoroughly in order to make the best choice possible.