10 and 12 Year Old Sisters Seized from Family by Hospital in Phoenix
In a case bearing several similarities to Justina Pelletier's family's experience with Boston Children's Hospital, and Isaiah Rider's family's experience with Lurie Children's Hospital in Chicago, 10 and 12 year old sisters have been seized by Phoenix Children's Hospital over a medical dispute. The mother has reportedly been ordered to not discuss the case with anyone, and has been forced to take down YouTube videos and a Facebook Page with over 3000 followers that was documenting the actions of Child Protection Services and doctors at Phoenix Children's Hospital. Kayla and Hannah Diegel suffer from congenital disorder of glycosylation, (CDG, a form of mitochondrial disease.) Part of their condition is also suffering with "Gastroparesis," which is a partially paralyzed stomach. As a result, they were fed through feeding tubes to bypass the stomach. During the course of their treatment, the girls' family doctor's clinic of eight years, Estrella Mountain Medical Group, suddenly sent a letter to the parents instructing them to transfer the girls to the care of Phoenix Children's Hospital Special Needs Clinic. They bounced between several different doctors at PCH, but they were all in the field of genetics. It was during this time that the girls were diagnosed with "congenital disorder of glycosylation" (CDG). Unknown to the parents at the time, there was funding and drug trials going on for this rare condition. The article on the Facebook Page reports: "The glycosylation trial whose collaborative agreement is through NHGRI/ TGEN opened up on March 14th, 2014, just 3 weeks before the two Phoenix sisters were medically kidnapped." The mother reportedly began to suspect that something was going on, as she reviewed the medical records and medications her daughters were receiving. She requested that the care of her daughters be transferred to another doctor "due to his neglect and endangerment of younger daughter i.e., not returning phone calls, ignoring her severe pain and documented bowel impaction being treated from home by registered nurses, under his supervision." Shortly after this, in April of 2014, the hospital took custody of both daughters away from the family through CPS. The family contends that the daughters are suffering since being removed from their family, as their feeding tubes have been removed. Kayla has reportedly lost 25% of her body weight after being in the custody of PCH for four months.