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December 7, 2009 is a day that will live in infamy for James and Kathleen Strickler, their daughter Brooklyn, and their sons Nathanael, Powell, Reagan, and August. It is the day they learned that the fraternal twins Kathleen was then carrying were both girls, and that one of the twins had a birth defect known as a congenital diaphragmatic hernia (CDH). James and Kathleen had never heard of this birth defect until the diagnosis, even though CDH occurs as frequently as spina bifida, cystic fibrosis, and muscular dystrophy. In a baby with CDH, the diaphragm does not completely form. This allows abdominal organs, such as the stomach, intestines, and liver, to slide into the chest cavity. Since a baby's lungs are among the last organs to form before birth, their growth is severely inhibited by the extra organs that have migrated into the chest cavity. Babies born with CDH have about a 50% chance of survival, depending on how big the hole is in the diaphragm, how many organs moved into the chest, and how small the lungs are at birth. If they can manage to breathe on their own, the defect can be surgically repaired.
To give their unborn daughter her best chance of survival, the Stricklers temporarily relocated to Pennsylvania so Kathleen could have her pregnancy monitored at the Children's Hospital of Philadelphia, which has the top CDH treatment program and facilities in the world, and give birth in their Fetal Treatment Center's Special Delivery Unit. The twins were delivered on April 13, 2010. Unfortunately, despite the doctors' heroic efforts, baby Allisyn Grace lived only ten hours. Her death was a devastating experience for the whole family. A month later, the Stricklers returned to Logan with Allisyn's healthy twin sister, Kathryn Julene. That following summer was a lost season, as the mourning family needed time and space to put their lives back together.
The Stricklers have decided to spend their time as a family raising awareness about CDH and fundraising for reasearch and treatment of CDH babies. With March 31, 2011 declared as Congenital Diaphragmatic Hernia Awareness Day in Utah by Governer Gary R. Herbert, the Stricklers decided to hold their first fundraising event to honor their daughter at the local Texas Roadhouse restaurant.
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