Ryann Hope Foundation

Jaime went in for a routine ultrasound on September 11^th, 2008 when she was 20 weeks along.  During the ultrasound it was discovered that the stomach and intestines were in the chest cavity and the heart was displaced to the right.  They were referred to a specialist at Carle Hospital who then confirmed the diagnosis of congenital diaphragmatic hernia (CDH) and referred them to St Louis Children’s hospital for further care.  They found out they were having a baby girl and would call her Ryann Hope.  They had multiple ultrasounds and checkups, and an MRI to get a better look at the tissues.  Ryann was put into the severe category of CDH with little lung tissue viewable.  Ryann was born on December 27^th, 2008 at Carle hospital with SLCH transport team there to take over her care immediately.  This was not the plan as Carle is 3 hours from St. Louis , but Jaime went into labor sporadically and could not make it to St. Louis.  The transport team stabilized Ryann after an hour and a half and was on the road to St Louis.  Once there it was determined Ryann would need to go on ECMO, extracorporeal membrane oxygenation machine, which takes the blood and oxygenates it for her and then returns it to her tiny body because she was unable to do this on her own.  While on this machine Ryann was given a blood thinner called heparin so that the machine does not clot, but runs the risk of internal bleeding due to the high levels of this medication.  She was improving and doing well on ECMO for eight straight days and on the ninth day of her life a cerebral hemorrhage was caught and she had to immediately be taken off of the ECMO machine.  Due to the under development of her lungs and the brain bleed she passed within an hour of coming off.  Ryann is an inspiration to all of us and her memory will forever live on through helping others and finding a reason for why CDH happens or better treatment plan that gives these babies a better than 50% chance of survival.

 For the detailed account of Ryann's life go to www.caringbridge.org/visit/ryannsmith