On June 22, 2006, my husband and I were faced with the most devastating news any new parent could ever endure. During a routine ultrasound our baby girl was diagnosed with a life-threatening defect called a congenital diaphragmatic hernia. CDH occurs when the diaphragm does not fully form, causing abdominal organs like the stomach, spleen, liver and intestines to enter the chest cavity. This results in severe pulmonary hypoplasia (arrested development of the lungs), causing the lungs to remain small and underdeveloped.

The cause of CDH is thought to be a failure of the diaphragm to develop between eight and 10 weeks gestation. What causes the failure of the diaphragm is unknown.

The incidence of CDH occurs 1 in 2,000 births in the U.S. and accounts for 8 percent of all anomalies. Although it occurs just as often as cystic fibrosis and spina bifida, the public is unaware of the occurrence of CDH.

After hearing the shocking news, our journey began. We did lots of research and found that University of California, San Francisco was the only hospital in the United States doing in-utero surgery on CDH babies. We felt at that time that fetal intervention would be our best chance to bring our baby girl safe into this world. We flew to San Francisco to be evaluated and were rejected for the in-utero procedure. There is certain criteria that must be met, and we were told that our case was too severe.

When delivering a baby diagnosed prenatally with CDH, it is extremely important to choose a hospital that provides postnatal treatment skilled in the management of CDH.

We researched more and discovered Texas Children’s Hospital in Houston. We flew to Houston at 30 weeks gestation and anticipated the birth of our baby girl, Mia Anne. Mia was born on Oct. 17, 2006, at 6:35 p.m. Although Mia was treated promptly and aggressively by the experienced staff, CDH had restricted her lung growth so much that they were unable to stabilize her and she died 2 1/2 hours after birth.

After losing our daughter, we found support and joined forces with the organization Breath of Hope, Inc., which is committed to supporting parents, children, family members and friends who face the diagnosis of a congenital diaphragmatic hernia birth defect. Breath of Hope’s mission is promoting public awareness, supporting the medical community and encouraging research efforts to one day prevent or successfully treat all those diagnosed with a congenital diaphragmatic hernia.

I wrote a letter to Gov. Sarah Palin asking her to proclaim March 31 as Congenital Diaphragmatic Awareness Day. The State of Alaska, along with 42 other states, proclaimed this day CDH Awareness Day.

If you would like to make a donation or learn more about CDH, you can log on to www.breathofhopeinc.com. I have also created a Web site in memory of Mia. You can come by to visit at www.mia-thiessen.virtualmemorials.com.

Jenny and husband Matt Thiessen reside in Kodiak.