VanoraPosted: July 21, 2015
Cass and her husband Michael were looking forward to adding to their family with the birth of a second child. An early ultrasound suggested extra fluid around the baby’s kidneys and the baby was positioned sideways for the entire pregnancy but these things did not seem to cause significant concern. Because of her position, Vanora was born via a C-section. At the time of birth it was immediately apparent that something was wrong. Cass could not hear the baby crying and Michael positioned himself so Cass couldn’t see her. Vanora was born tightly twisted and arched backwards and she required resuscitation. Vanora exhibited other signs of a potential genetic disorder so she was transferred to Nationwide Children’s Hospital when she was just six hours old.
Cass had some complications that required her to stay in the hospital so didn’t see her daughter for three days. Vanora spent two months in the NICU at Children’s. Cass and Michael learned that she had hydronephrosis, a swelling of the kidneys due to excess fluid, her brain was underdeveloped, and she had multiple skeletal abnormalities. Vanora also was unable to swallow safely so she is fed with a G-tube. Cass says the time in the NICU was very difficult, particularly because it wasn’t clear what was wrong or what they could expect for their daughter’s future.
After going home, Vanora was readmitted twice in a short time. Because of the ongoing complexity of her condition, Vanora was referred to the Home Based Palliative Care Team. Vanora’s prognosis is unknown and her parents have decided that they want to emphasize her quality of life. They particularly want to avoid surgeries that don’t have a clear benefit for her and might cause her unnecessary burden. Cass is appreciative of the Palliative Care Team because “They really listen to our concerns and they support us for not automatically choosing an aggressive path. They actually care about Vanora as a whole person. Being able to call whenever I have a concern and get an appointment instead of going to the ER is a big plus!” Happily the hydronephrosis appears to be healing, Vanora’s body has relaxed and straightened out, and it is even possible that she may be able to eat someday. She’s living comfortably at home now with her parents and the most adoring and doting big sister any baby ever had. Ariana is absolutely dedicated to Vanora. She’s very protective and she is a strong advocate for Vanora, making sure if a small gift is brought to her by the Palliative Care Team that “my baby sissy” gets a gift also.