** 4/18 Update: Hunter and his family will be featured on Komo News Thursday evening, April 19th, helping to raise awareness for CDH and CHERUBS. Thanks to Komo News for their help in spreading the word! April 19th is also National CDH Awareness Day.**
I would like to thank Christina for contacting me with Hunter’s story and raising awareness for CDH and the vital work of CHERUBS. I am grateful to live in a community where people reach out and feel comfortable enough to tell me their stories so I can attempt to re-tell them. Sometimes small children facing huge battles are the strongest ones of all. Hunter is one of those…
Hunter is 4 years old. He lives right here in Snoqualmie. He was born with a birth defect called Congenital Diaphragmatic Hernia, CDH. Hunter was given a 10% chance to live. He took his low odds and ran with them – proving to everyone for over four years his warrior status.
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to completely close. The resulting opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies born, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. Its cause is still unknown.
Overall, Hunter has spent 45 days in NICU as well as several other hospital stays and undergone approximately ten surgeries. He’s had more medical procedures in four short years than most people have in a life time. His missing diaphragm was replaced with a synthetic patch; he uses breathing machines; suffered a stroke; had no pericardial sack; had RSV; then had his diaphragm patch repaired; bowel blockage and reconstruction; months of IV antibiotics; Lovenox Shots to dissolve blood clot in his heart; and battles low weight. He’s fed by G-Tube and has physical, occupational and feeding therapy daily. Through all this his mother, Christina Smith-Stembler, says “he looks at me and brightens every room with his smile.”
CDH is as common as cystic fibrosis and spina bifida, yet most people don’t know what it is. CHERUBS, The Association of Congenital Diaphragmatic Research Awareness and Support, was formed in 1995 to raise awareness about CDH, to support all babies and families affected by it and to promote research into its causes, prevention and CDH treatments.
Hunter has two older sisters, 16 and 20 years old, and a baby brother who is two. His mom, Christina, says Hunter’s condition “in a weird way, has made us stronger as a family and has taught us lessons we will never forget.” Christina became the Washington State Rep and Oregon Co-Rep for CHERUBS because she wanted other families to know “that there is someone here for them, someone who they can depend on and a little boy who can provide some light in the darkness of CDH.”
This Thursday, April 19th, is the International Day of Awareness For CDH. Over 250 people will participate in a “Parade of Cherubs” in Washington, DC. Children donned in wings will begin the three-mile walk, which starts at the Lincoln Memorial, travels past the Washington Monument and the White House and then concludes at the U.S. Capitol Building.
Washington CHERUBS representative, Christina, organized the Seattle CHERUBS parade in honor of Hunter and other CDH warriors who spread awareness about the birth defect daily. The April 19th parade begins next to the Seattle Aquarium at 11AM and travels to Waterfront Park where balloons will be released in honor of children lost to CDH. A virtual parade of Cherubs has also been set up on Facebook and Twitter so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events.
To learn more about CHERUBS and the upcoming parades, please visit www.cdhsupport.org.