Boosting CDH Awareness: Allisyn & Kathryn's Story | The Children's Hospital of Philadelphia

Center for Fetal Diagnosis and Treatment

Boosting CDH Awareness

The Fetal Family Reunion was bittersweet for Kathleen and her family. It was a time to celebrate Kathryn, the chubby blond toddler they see every day, and a time to remember her twin Allisyn Grace, who was born with congenital diaphragmatic hernia (CDH) and died 10 hours later.Kathryn
Rejoice & Remember
Kathleen and Vincent, with baby Kathryn, returned to Philadelphia to thank the staff at CHOP and to remember Allisyn Grace, Kathryn's twin. For more photos from the reunion, see our slide show.

“This is almost a sacred place for us,” Kathleen said looking around The Children’s Hospital of Philadelphia. “We’re here to honor our daughter – to visit the piece of us that we lost here. But we’re also here to thank everyone who helped us deliver one healthy baby and deal with the passing of our other daughter.”

Like most families, Kathleen and her husband Vincent, didn’t know much about CDH until it happened to them. They learned a lot quickly after that.

CDH is a birth defect characterized by the development of a hole in the diaphragm, very early in gestation, that allows abdominal organs to move into the chest and restrict lung development. It occurs in about one in every 2,500 live births and can be fatal.

Kathleen and Vincent decided clinicians at CHOP offered the best chance for both twins. So, the couple and their five children relocated from their home in Utah to the Philadelphia area for the remainder of Kathleen’s pregnancy.

When Allisyn passed, the family was crushed. Nurses, child life and bereavement specialists helped Kathleen and her family deal with their grief, recognize their loss, and then refocus on Kathryn, the beautiful baby they were able to take home.

Along with helping her family heal, Kathleen now has a new mission: Getting the word out about CDH.

“One in 50 infant deaths is caused by CDH,” Kathleen said. “I really think we need to create a national CDH Awareness Day – one day that all families and all groups can rally around.”
Currently, different awareness/support groups observe CDH Awareness on March 31, April 13 and April 19. By agreeing to one day, Kathleen believes groups with similar interests will get the message out to more people across the country.

She feels so strongly about it that she planned to travel to Washington, DC, to meet with U.S. senators and members of congress to ask for their help in creating a National CDH Awareness Day.

As she watched Kathryn run around under her husband’s watchful eye, and her other children enjoy the slide and obstacle course, Kathleen smiled.

“I met another mom today who was in the SDU (Special Delivery Unit) at the same time as me. Her baby with CDH lived,” Kathleen said with a smile and tears welling up in her eyes. “We have to rejoice in the miracles that do happen.”

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