Here is the letter I ma finalizing to send to Babytalk magazine. I had been reading it throughout my pregnancy..mostly wishing I could worry about the little stupid things these other moms worried about. But, I do remember them doing a segment for a couple months about Downs sydrome, and they also have had several articles about Autism...so I am going to assume they may be interested in CDH as well.
Here is is, let me know if you have any ideas! I am mostly open to constructive criticism!
To the Editor;
My name is Sarah Deskins and I am writing in an attempt to raise awareness on a subject very personal to me and about 2-3,000 mothers a year. When I was pregnant with my son, Jeremiah, I learned through the 20 week ultrasound that he would have a very complicated yet virtually unheard of birth defect.
Congential Diaphragmatic Hernia affects about 1600 babies a year in this country. 50% of them will not ultimately win the battle. Some will live minutes, some months, even years. Some will die of infection, some will simply tire of fighting, and some parents will have to decide that there is no reason left to make them fight anymore. There are no 2 cases alike, and there is no known cause.
CDH is a defect occuring anywhere from the irst four weeks of gestation on, and it happens whehn a portion of the diaphragm either fails to form at all or forms a hole. The internal organs in the abdominal cavity herniate through this hole or unformed portion and crowd out the area for the heart and lungs to form. Lung development being the last to happen in gestation, they are always affected. There are many types of CDH and the severity and outcome depend on the organs involved, hernia size, lung/heart function, and other complications.
Jeremiah had virtually no left diapragm, whcih caused his stomach, liver, bowel, and gallbladder to occupy his chest cavity. This displaced his heart, restricted left lung growth to the size of a nickel, and caused pulmonary artery deformities in his right lung. he had other problems involving his kidneys, and dealt with pulmonary hypertension and severe gastroesophogeal reflux. After several close calls and 5 surgereis he came home 3 months to the day of his birth with a plethora of medications, oxygen, and a feeding pump. We had our Christmas, New Years, and 20 more days. He died in bed with me early in the morning of January 12th, 2008.
Since my experience with Jeremiah, I have become an Ohio representative for a CDH support and awareness group called Cherubs. We know there will probably never be a "cure" for CDH, but so long as it is taking our children we feel ther should be a system of support for the parents facing it. There shoudl be awareness brought to the public about the battles these baies fight. Even if we never even find it's cause, shouldn't we be behind the babies giving it a run for it's money? CDH occurs as often as Cystic Fibrosis and Spina Bifida, but it has next to no media coverage. No one seems to be aware of the parents who give up their jobs, downsize to apartments, or live months in Ronald McDonald houses to stand by these babies. The families at Cherubs are willing to tell of their NICU Christmases, hours lost to waiting rooms and phone conferences, the late nights watching tiny chests shiver under oscillator breaths. We want people to be as proud of our babies as we are, whether survivor or non- survivor. Most people look at our children with their vents, traches, tubes, adn scars with pity. But if we find an outlet to tell their stories, pity will be replaced with respect.
If Babytalk would like to help us tell our stories, please contact me at the information below.
I thank you for your consideration,
Sarah E. Deskins
sdeskins@cherubs-cdh.org
400 Park St. Apt. B1
Cardington, Ohio 43315
(419)512-3446
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