Balaton, MN

The Stepp Family

Whitley Stepp
Infant-Related Illness

Whitley was born with a rare condition known as CDH (Congenital Diaphragmatic Hernia ) . Following the news of her condition at 21 weeks into the pregnancy we were told we would have to relocate to Minneapolis 2 to 3 weeks before delivery 3 and a half hours away from home. Throughout the pregnancy ultrasound visits were weekly sometimes twice a week at our local hospital with multiple ultra sounds performed in Minneapolis monthly. After relocation Whitley was delivered at 39 weeks of pregnancy.  Following delivery she was quickly taken into extended hospital care where she was placed on a ventilator and monitored until treatment was assessed. After a few days, surgeons decided to place her on a 10 day ECMO treatment for a lung and Heart bypass period. During ECMO the Hernia repair was successful. A few days later Whitley was removed from ECMO when things were starting to look positive based on doctors assessments . Things were moving in the right direction slowly when we hit a major speed bump in the road to recovery. 
Whitley suffered a major stroke in the left side of her brain resulting in a series of Seizures and a blood clot that may or may not resolve in the future. We are currently on 26 days in the hospital awaiting answers while running tests and moving forward in her surgery recovery. We know we are starting a long road with physical and occupational therapy due to the stroke and may not know how it will affect her for quite sometime until she further develops and grows. The end is not yet determined as to when we will be able to go home.  

May 28, 2020
5/27/20 update

Miss Whitley has been making great strides. There have been some bumps along the road with weaning off medications and feeding/GI issues.  She is now on a ram cpap for breathing and they will try to continue weaning that down. Her lungs definitely still need some time to get stronger and grow!! We have been working with her daily on occupational and physical therapy to help her with the right sided weakness from the stroke. She is one resilient little girl, and is showing us improvement! We still have a long ways to go with feeding tolerance and many other aspects before we can start talking about going home, but we are just so thankful that we have one strong little girl!