Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, January 17, 2012

Daphne, One Determined Little Girl!

The Start - in the NICU

In her parents own words: 
Daphne Angela is our 2 year old Earthly Angel.
Daphne's Congenital Diaphragmatic Hernia (CDH) was diagnosed in-utero in the 33rd week of pregnacy. Her CDH was left-sided with all of her intestines, her stomach and her spleen in her chest cavity, displacing her heart and crushing her lungs. Daphne was born at 38 weeks, just before midnight on September 23, 2009, at Evanston Hospital in Evanston Illinois. Evanston Hospital was the closest hospital near us with a Level III NICU. It was several weeks before Daphne was stable enough for her first CDH-related surgery. Her first hospitalization lasted until the very end of November 2009. Following her discharge, she required physical, occuptional, and feeding therapies, as well frequent follow-ups with her pediatrician, pediatric surgeon, pediatric GI, pediatric cardiologist, and pediatric ENT. CDH-related complications required Daphne to undergo additional medical procedures in June, July and August 2010, and, thankfully, her g-tube was removed on August 27, 2010.

Thanksgiving 2010 was a wonderful time and we celebrated it with family. Daphne was walking and even climbing on furniture, and she had so much fun with her little cousins.
On December 16, 2010, just when we thought everything smooth sailing, Daphne started having strange symtoms involving gagging, lethargia, and she absolutely refused to eat or drink. We took her to the ER by our home. The doctors admitted not knowing too much about CDH-related complications and, at first, told us to go home and said it was "just a stomach bug". However, after insisting on further testing, Daphne was admitted for observation. By 4 AM on Saturday, December 18, 2010, Daphne was in critical condition and needed to be transported to a hospital with a dedicated pediatric intensive care unit (which turned out to be Comer Children's Hospital at the University of Chicago 20 miles away). It turned out that Daphne had a total bowel obstruction caued by adhesions from her original CDH repair surgery in 2009 which had wrapped around a bend in her small intestine like a tourniquet. Emergency surgery was performed and Daphne was on life support (again) for several days after. Daphne spent Christmas 2010 in the hospital and sufferred complications requiring additional hospitalization until the end of January 2011.

Over the course of this 2011, Daphne continued her struggle to overcome various CDH-related issues and her friends and family remain cautiously optomistic about her future.
Hopefully CDH Awareness Day will help make medical professionals as well as lay people familiar with the condition, its frequency, and its associated long-term complications so that they think outside the box when CDH children become ill without any other apparent explanation.
I want to thank all of the people who run Breath of Hope, Inc. and who share their experiences and valuable insights on this list serve.
-Dina and Barry

Nothing is Stopping her Now! :)

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