The Walk Of The Cherubs: “No Step Is Too Small”
By Cookie Steponaitis
Congenital Diaphragmatic Hernia sounds like a condition most people wouldn’t like to have, but it sounds fixable, like there is a procedure for that. This could not be farther from the truth. In the case of children stricken with CDH, fifty percent of them do not survive. Every ten minutes a child is born with CDH and 1,600 alone last year. Since 2000, 700,000 families have awoken to a day that includes three new words that rip apart the fabric of their lives and sadly in many cases leave them without a child. Even though CDH is as common as Cystic Fibrosis, CDH is mostly unknown to the American public. On April 19th, 2012, that began to change as the day was proclaimed The International Day of Celebration of CDH Awareness.
From the feet of Abraham Lincoln to the steps of the Capital Building in Washington, DC, families from seventeen states walked and met Alabama Senator Sessions who drafted and presented the CDH Bill, asking Congress for $ 50 million in funds for CDH research. At the same time, in St. Louis, Seattle, Chicago, Denver, Portland, Peoria, and across the ocean in the UK, groups marched in parades to raise awareness about this childhood disease that as of today defies explanation.
Marching in DC was the Vermont delegation led by Dustin, Jade and Landon Hunt, who were speaking on behalf of their son Liam, who lost his battle to CDH last year dying just weeks after being born. Channeling grief and anger into a passion for education and research, the Hunts, family and friends reached out and found a kindred spirit in the form of Dawn Williamson, who is the founder and president of Cherubs- the Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. Ms. Williamson started the organization in 1995 following the loss of her six year old son to the disease.
While every case of CDH is unique, the condition occurs in the first trimester of pregnancy and stops the lungs from developing fully. The diaphragm fails to close or has a hole which allows herniation of lung tissue and this allows abdominal organs into the chest cavity. While 50 percent of the babies survive, there are a host of complications including feeding tubes, intubation, asthma and other problems. At present there are no reliable indicators a family can use to determine if a CDH baby will live and little or no research being done to combat this condition.
While Cherubs is a small organization it reaches out to all parents and families with a CDH child and provides current information, awareness, support, and documents any current research to a growing group of people impacted by this condition and those across the globe who want to bring it out of the shadows and into the light of national attention. “Both Dustin and I are determined to bring CDH to the attention of people both in Vermont and nationwide,” shared Jade Hunt. “ When we walked in DC, and heard the stories of those families who have lost children to CDH and those who are fighting to live, it made us more resolved to carry the message not only for our son Liam who died, but for theirs as well.
After communicating with Diane Lanpher and Vermont governor Peter Schumlin, the Hunts were able to have a proclamation passed declaring April 19th, 2012 CDH Awareness Day and are hoping to be able to introduce the CDH Bill into the Vermont House of Representatives as do their counterparts in the other 49 states.
“While 50 million sounds like a lot of money,” remarked Dustin Hunt.” It is one step in a long journey that we have to go through to promote research, identify the cause, and be able to offer more than hope or grief counseling to those who lose their child.”
While the Hunt family plans on being active in the months and years ahead, keeping not only their son Liam’s memory alive, but channeling the passion, grief and hopes of the other families toward research and a cure, there are ways right now for people to reach out and get involved. www.cdhsupport.org offers statistics, fundraising, connections, support groups, and countless ways for people to rally around the children and families facing or reeling from the impact of CDH on their lives. “We want people to be aware of all of the Angel Babies that are gone from our lives but not from our hearts,” reflected Jade Hunt. “We want to educate the public to the name, the condition, the issues and the need for more help. Together, we can give families more than just hope; we can bring about research and change.”
Scrolling through the list of Angel Babies who have lost their fight to CDH, the shocking reality of CDH becomes more than a medical term on a page or even words in this article. It is the heartbeat of a child, a precious gift to the world silenced before their time and the families left to cope with a diagnosis, prognosis and set of statistics that raises more questions than it answers. “Time has not moved on for me,” writes CDH parent Netta Wilson. “Time has not moved on for me. The numbness it has disappeared. My eyes have now cried many tears. I see the look upon your face. She must move on and leave this place. Yet I am trapped right here in time. The song is the same, as is the rhyme. I lost my child… Today.” The Walk of the Cherubs was one step in a journey that will take many more steps to complete. For the Hunts and all the parents who have and do face CDH, the road does not end until the condition has a cause, a treatment and is no longer a statistic that careens into the lives of so many each year.
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