Above and Beyond

For the last couple of years our cousin, Lindsy, has gone above and beyond just wearing turquoise on CDH Awareness Day, and I wanted to share some of the amazing things she has done.

Lindsy is about to graduate from the Radiography program at Labette Community College, and she has helped to educate her classmates and even some of her instructors about CDH, most if not all of whom knew nothing of CDH prior. In fact, CDH is not even in their pathology textbooks.

Last year, Lindsy made and distributed this flyer and turquoise ribbons to her classmates and coworkers at her clinical sites, and encouraged them to spread the word about CDH.

This year Lindsy made this CDH board during the fall semester featuring pictures of Sofie and her xrays and CT scans. It is displayed in the Allied Health Building on the first floor.

Then for CDH Awareness Day this year, her class (2nd year students) all wore turquoise, and the 1st year students wore their radiography t-shirts with turquoise ribbons.

They also had a booth on campus featuring CDH and Sofie's story.

They distributed brochures Lindsy made about CDH, ribbon buttons, and candy. Our video about Sofie's story that's at the top of our blog was playing on the laptop there on the table.  She also had her clinical department wear turquoise, and she made a cake with turquoise sprinkles. (Lindsy is front right in the grey scrubs in the photo below.)

Lindsy and her classmates and future coworkers may very well be the ones to first identify an abnormality on a routine 20 week OB ultrasound. The fact that her entire class and the entire class after her will graduate knowing about CDH and Sofie's story, because of what Lindsy has done, is no small accomplishment. And it doesn't end there.

She has also educated many clinical sites located throughout various hospitals in Southeast Kansas, Southwest Missouri and Northeast Oklahoma. Her instructors have been so impressed with the materials she has presented, CDH education will remain after Lindsy has graduated. Her school even observes CDH Awareness Day by wearing turquoise each year, and the booth shown above will be an annual event for the Radiography Club.

With around half* of all CDH cases still being undiagnosed until after birth, Lindsy's contribution to CDH Awareness will undoubtedly be life-saving many times over. Lindsy and her classmates will recognize CDH and make prenatal diagnosis happen in cases where it may not have happened before.

For those who end up working in rural areas, making that prenatal diagnosis will definitely have a huge impact on the outcome of that baby's survival. Babies born in rural hospitals with undiagnosed CDH are at a terrible disadvantage. Many CDH babies have immediate needs for high frequency ventilation, inhaled nitric oxide, and ECMO. Those things are not available in small rural hospitals and that can decide a baby's fate.

Even here in Kansas City, with necessary equipment readily available at some hospitals, we would not have chosen to deliver Sofie at a hospital with a Level III NICU if we had not known about her CDH. It was because of her prenatal diagnosis, we were able to prepare and make arrangements for her to be born in a facility that had all the equipment she might need. And as it turned out, she did immediately need high frequency ventilation and inhaled nitric oxide right out of the delivery room. Had she not been diagnosed prenatally, she may not have survived.

I have thought of the radiographer that did our 20 week ultrasound many times since the day of our diagnosis, and how she was the first person to save Sofie's life. Thank you, Lindsy, for saving the lives of babies like Sofie!!!


*Sources
Congenital diaphragmatic hernia: evaluation of prenatal diagnosis in 20 European regions.
Antenatal detection and impact on outcome of congenital diaphragmatic hernia: A 12-year experience in Auvergne (France)