Karley: Induction After Extreme Swelling, C-Section Due to Complications from Rare Genetic Conditions + NICU Stay, PTSD and Postpartum Anxiety

Karley joins Liz and Natalie today to share her stories of her two births and navigating life with a medically-complex child.

Karley and her husband knew they wanted to have children while they were young. Karleys first pregnancy ended in a miscarriage while she was living away from family and friends finding it difficult to navigate. Her second pregnancy was filled with anxiety but progressed well. She ended up being induced due to excessive swelling and high blood pressure. After issues with the epidural were resolved she had a smooth birth. Postpartum was difficult due to complications with her daughter at around 6 weeks. A simple visit for treating a fever turned into a hospital stay for an e-coli UTI. That was Karley’s first of many experiences with hospital stays and the jump start to her postpartum anxiety.

Karley and her husband decided to try for a second baby when their daughter was potty-trained. They got pregnant after a year of trying. She had a great pregnancy up until the 20 week anatomy scan when the doctor found complications in the ventricles and brain. She had to do extra monitoring and met with specialists throughout the rest of her pregnancy but so much was left unknown. The plan was to be induced at 36 weeks at a specialty hospital so baby could be transferred directly to the NICU to receive treatment right away. After the induction had already begun, the doctor decided that a c-section would be a better direction. After her daughter was born, they all spent the night together in the recovery room instead of her being admitted to the NICU.

The next morning the pediatrician sent the baby to the NICU and Karley had tough choices to make- stay in recovery to heal and rest from surgery and spinal block complications or go with her daughter. Nora stayed in the NICU for six days but had continued complications after being home due to the increased fluid in her brain and ventricles. At six weeks the doctors decided it was time to place the shunt. That was the first time Nora opened her eyes and smiled at Karley and her big sister. Since that first shunt, Nora has had multiple surgeries and countless hospital visits. Karley has had to advocate for Nora while navigating her own mental health issues including PTSD from the birth and medical trauma she and her daughter have endured.

Nora was born with not one, but two rare genetic conditions: Loeys-Dietz Syndrome and Osteopathia Striata with Cranial Sclerosis (OSCS). These genetics have caused hydrocephalus, club foot, hip dysplasia, sleep apnea, seizures and much more. She has 14 specialists and multiple appointments every week. She is celebrating her “shuntiversary” this week and she is 3 years surgery free!