What happens when your child is diagnosed with a rare and debilitating disease? That’s the question the Jones family found themselves wrestling with after their 3-year-old daughter Emma was diagnosed with early-onset Chron’s disease. This rare diagnosis stunned the family, including Emma’s mother, herself a pediatrician at Duke. We partnered with the Jones to help them navigate the stress of conflicting diagnoses to find the right care partner for Emma.
Emma Jones was a happy, loving, normal 3-year-old girl until, one day, her parents noticed something was wrong. Jeff, her father, and Lindsey, her mother and a Duke pediatrician, were shocked when they received the final diagnosis: early-onset Chron’s disease. Only 5% of all Chron’s disease cases occur in children under the age of 10. They never expected their child to be one of them. After seeking help, and receiving conflicting advice, they turned to Bedsiide for help.
After receiving the initial diagnosis, the Jones started looking for information. They started somewhere they knew well and that is world-renowned for their quality of care, Lindsey’s employer Duke Hospital. They got a second opinion through the Children’s Hospital of Philadelphia (CHOP), another world-class medical institution.
They turned to us and we were was able to remove that stress from their life while helping them navigate the system so they didn’t feel so overwhelmed.
Plan of Action & Outcomes
Once the Jones partnered with us, we walked through Emma’s medical history to have all the information needed to find the best doctor for her unique situation. Their personal expert, Corey, performed research and conducted a nationwide search to find the best option for a high-level third opinion and personalized Q&A with the Jones. Corey located the perfect specialist — Dr. Alejandro Flores at Boston Children’s Hospital, a facility renowned for their inflammatory bowel disease (IBD) center.
Our work didn’t stop once we identified and contacted Dr. Flores to help with Emma’s case. Our team of experts helped catalog Emma’s daily activities, her health records, and all of the questions the family was hoping to get answered. The team performed a detailed medical record review in collaboration with Lindsey in order to ensure that all of the necessary information was included. This referral packet, including the medical history review, questions, and records, was faxed to Dr. Flores for his review and consideration and looked to schedule a peer to peer call with Corey and the Jones.
Because of our dedication, the Terrells were able to have 45 uninterrupted minutes with an expert on their daughter’s rare condition. We made sure that this consult was able to be conducted virtually so Jeff, Lindsey, and Emma didn’t have to arrange travel from North Carolina to Boston, saving them valuable time and money.
We were committed to helping facilitate the initial meeting to make sure the family was comfortable, had all their questions answered, and were advocated for. This commitment led to Emma getting the care she needed, while Jeff and Lindsey were able to experience feelings of relief and lower stress around the care of their child.