This Saturday April 19th marks a day of awareness. While many individuals are unaware of what Congenital Diaphragmatic Hernia is. Today, I hope to help change that and educate more so they can be aware and how they can help.
When I was pregnant with Kelsie, I joined an online birth group and I’ve stayed close to several. One of those friends, is Nicki, and you’ll read more about her story with CDH in the information below. Nicki’s last child was born with CDH and he has had numerous surgeries since born. CHERUBS had a goal for all states to declare April 19th Congenital Diahragmatic Hernia Awareness Day. Knowing I was in Iowa, she asked me to contact Governor Branstad with a proclamation request. I am very happy to say that I hear back almost immediately and the proclamation was APPROVED. Iowa joined the list of states wanting to officially help bring awareness to this cause.
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. Globally, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.
“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year” said Sen. Session of last year’s event.
Events have been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications.
Nicki Young volunteered for CHERUBS because her child was born with CDH, same with her oldest brother. Nicki found out her son, Anderson, was born with CDH just 8 days before he was born. Nicki was already aware of what this was, somewhat, as she knew her whole life that her oldest brother only lived 8 hours, passing away from this life threatening birth defect. Fast forward to 2012, when Nicki learned her 4th child (her husband’s 10th), would be born with his. Anderson is one of the lucky ones, a survivor. He was in the NICU at Banner Desert for 28 days. Underwent surgery at 3 ½ days old and had 2 more minor surgeries in the NICU as well. He still has complications related to CDH, many of which are GI related as well as pulmonary related. He has had more surgeries to try to correct GI issues. He also has weekly/bi-weekly physical, occupational and feeding therapies, as well as being regularly followed by his surgeon, pulmonologist, gastroenterologist, ENT and pediatrician. He continues to struggle with medical issues, and is constantly having tests/procedures so we can diagnose and try to fix problems he has.
“CHERUBS has members in 60 countries now and we also work with over 2 dozen other organizations through ACDHO. We expect families around the world to participate in small and large ways throughout the rest of the month of April to help raise Congenital Diaphragmatic Hernia Awareness” says Williamson. “We are also working hard on gathering those remaining 10 states and getting a Resolution introduced and passed in the House. We are a large group of very passionate and determined moms, dads, grandparents, survivors of CDH. We do not take ‘no’ for an answer when it comes to getting these children help”.
Help is indeed needed for this very underserved community. Congenital Diaphragmatic Hernia is as common as Cystic Fibrosis and Spina Bifida but has a fraction of the awareness and research funding. In 2010 alone, NIH (National Institutes of Health) provided $11 Million in research funding for Spina Bifida and $79 Million for Cystic Fibrosis. CDH was awarded just $4 Million in research funding. The charity funding difference is even greater with the largest Cystic Fibrosis charity receiving over $313 Million, Spina Bifida’s largest charity raised over a half a million dollars and CHERUBS, the world’s CDH charity, raised just over $59,000 to service the same number of families. While the other 2 more well-known causes have hundreds of charities providing services and research funding, CDH has just a handful of registered charities helping families and funding research.
“Awareness is key” says Williamson. “Without awareness, there is no funding. No one wants to donate to a cause they have never heard of. It’s very frustrating that our children are often overlooked but until we raise more Congenital Diaphragmatic Hernia Awareness and get the public to know about and care about these babies, the funding will not be there. So we struggle to fundraise and raise awareness on our own every way that we can and to continue to offer free services to families and fund research as much as we can. Hopefully, someday soon a large corporation or well-known celebrity will take our cause under their wing and help these children on a level that our charity is unable to do even with state and federal proclamations and lit buildings. We raise awareness to raise research funding. Babies are dying by the dozen every day and we have no idea why or how to stop it. That is unacceptable”.
A virtual parade of Cherubs has been set up on Facebook, Twitter, Instagram and Pinterest so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events. Families are also lighting candles at 7:00 pm in their time zones worldwide as well as many are releasing balloons, lanterns and butterflies to honor and remember their children.
If you would like to help spread the word, or to learn more about CHERUBS and the upcoming events, please visitwww.cdhawarenessday.org.
