Lilah Kate Joiner

First post: 2/4/2016 Latest post: 1/12/2017
Lilah Kate was diagnosed 30 weeks prenatally with Autosomal Recessive Polycystic Kidney Disease. We were told on August 10, 2015 by a specialist that she would only live for about an hour when she was born. September 15, 2015, Lilah Kate decided to make her arrival. She spent 3 weeks in the NICU at UMC and got to go home October 2, 2015. On October 7, 2015, her father lost his life in a car accident. She was hospitalized two times in November 2015 for different reasons. She was doing well until December 6, 2015 when we took her to the ER. She was hospitalized at Batson for RSV. She was put on the ventilator a few days after going into the hospital and was on it for most of her hospital stay. January 24, 2016 she was transferred to Childrens of Alabama in Birmingham because her condition was not improving. On February 5, she had both polycystic kidneys removed due to the fact they were so large, she had no room to eat or breathe. She will remain on peritoneal dialysis at home every night, until she is transplant age (at least 1 year) and weight (at least 10 kg) and until they find the perfect match for her. She will also need a liver transplant in the future as well due to the ARPKD causing congenital hepatic fibrosis (CHF). She is now currently on hemodialysis 5 times a week in Birmingham due to complications with her PD catheter and it needing to be removed from her stomach.

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Lilah Kate’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register