Letter to the Editor: Today is Congenital Diaphragmatic Hernia Awareness Day

Not all Babies come home from the Hospital in two days. Mine came home 46 days later.

My daughter Madeline was born Dec. 2, 2009. She was born with a Congenital Diaphragmatic Hernia (CDH). CDH is a birth defect in which there is an abnormal opening in the diaphragm allowing part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity, not allowing the lungs to completely develop and forcing the heart to move.  Not all babies survive this devastating birth defect. 

In fact, statistic show there is a 50 percent survival rate. Madeline was also born with Pulmonary Hypertension and doctors had to control it before undergoing the repair surgery. Finally 12 days after her birth, she underwent the five hour surgery to close the diaphragm using a Gortex Patch. Eventually all her organs would be put back in place.

Since children born with a Congenital Diaphragmatic Hernia endure a long recovery, they are at risk of developing illnesses associated with the hernia repair. 

Madeline has been diagnosed with the following illness:

• Moderate Hearing loss in both ears.
• Itessusuption: a medical condition in which a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another. This can often result in an obstruction.
• Pectus: this is the most common congenital deformity of the anterior wall of the chest, in which several ribs and the sternum grow abnormally. This produces a caved-in or sunken appearance of the chest. It can either be present at birth, or not develop until puberty.
• Acid reflux.
• She has been receiving speech and developmental therapy since coming home from the hospital after spending 46 days in the NICU at University of Chicago Hospital.

Madeline underwent a second surgery when she reached one year of age called Nissen fundoplication which is a surgical procedure to treat gastroesophageal reflux disease.

Madeline has a long road ahead of her going into her adult life. 

April 19, 2012 has been declared by the State of Illinois as Congenital Diaphragmatic Hernia Day. We need to raise awareness to conduct studies of why this rare illness happens and to see if there is a cure for these babies before birth. 

You can find more information on this devastating birth defect at http://www.cdhsupport.org

- By Alicia Fonseca, mother of Madeline.