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sarah.deskins
03-26-2008, 05:43 PM
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

sarah.deskins
03-26-2008, 05:44 PM
Obviously, I will be spell checking it before i send it, dont worry about that!

any ideas? anything you want to add?

DanielleGolding
03-26-2008, 06:31 PM
Hi Sarah,

I think you have done a wonderful job. I like the way you introduce CDH and then go on with your personal story. The only thing I can think of to add is that sometimes (as in Lily's case) it wasn't diagosed until after birth, even though we go to an ob/gyn who performed an ultrasound at each visit. That astounded me but he believes that the position Lily was in prevented him from seeing it and she must not have herniated til later in the pregnancy. But as you say all cases are so different and the drs only presume this as we were blessed that in Lily's case she still had a decent amount of lung tissue and there wasn't too much damage.

I also want to say how sorry I am for you guys losing Jeremiah. I can't imagine what you have been through and I really feel for you and your family. Good luck with the article!!

Danielle xx

TaniaSmythe
03-26-2008, 07:18 PM
Sarah, what you have written sounds perfect but like Danielle i would also add about CDH not always being detected pregnancy.
I hope you get a response or better yet an article in babytalk, goodluck

StephanieOlivarez
03-26-2008, 10:26 PM
I truly hope that Babytalk will write an article. I sent them a letter and had no response.
Positve thoughts that you get them to write an article.
Let us know what comes of it.

DanielleGolding
03-27-2008, 05:13 AM
I might've mentioned it before but I also wrote into one of the Aussie mags "Practical Parenting" as they usually do similar feature articles on other conditions but haven't had any luck. I'm going to try again though.....anything to get the word out there hey!

KateC
03-27-2008, 09:22 AM
I like BabyTalk mag. Wonderful letter Sarah! Let us know if they reach you!

sarah.deskins
03-27-2008, 10:16 AM
I can add the misdiagnoses of C-Cam and the sometimes undiagnosed issues as well. I kind of have my numbers backwards to, which I will need to fix. Im going to leave this up for a little while before I send it in.
Its very frustrating how many moms have tried to get people to listen and get no response. But, if you send in a favorite baby must have product idea or some adorable little baby moment...you get a friggin years supply of diapers. Live in the NICU for a couple months, ultimatley lose your child...you get an awkward moment and blown off in conversation. No one likes to hear the sad stories. So, I dont really know what I expect but sometimes I get so mad at the world I could drive my car through a Baby Gap....

Corin Nava
03-27-2008, 10:59 AM
Sarah-your letter sounds great! You are right, it is frustrating not to be heard and more or less ignored by some. People often want that happy story-they don't want the sad ending, but thats life. Not everything ends the way we want. I figure if we keep pushing someone eventually will listen...right? Just keep doing what you are doing Sarah, you are honoring Jeremiah's memory in so many wonderful ways.

KateC
03-27-2008, 03:57 PM
Corin is right. I sent Shannon's story to all local news stations and papers with no response, not even a thanks but no thanks. I became frustrated, and am sad to say I don't know if I can work up the courage to send her story out knowing that people want to hear happy endings not the sad ones. One day I will try again but right now it is a little heart breaking for me. I am glad you have the courage to right and tell the world Jeremiah's story :)

AshleyKnight
03-29-2008, 12:15 PM
What do you have to do to get on your local news?

Dawn Torrence Ireland
03-29-2008, 08:54 PM
Ashley, just call them and say that you have a story you'd like to share.

Happy Endings.... really, really push how you're volunteering, turning around something beautiful but sad into a way to help others. Give your story a title to catch their attention like "Local mom channels grief for her son (or daughter) into helping others and raising awareness around the world" or "Local mom helps to raise awareness for deadly birth defect after losing her child". Every reporter wants to see their name under a headline that catches attention.

Mother's Day is coming up so maybe try to use that for an article about that day. Like "When You Would Give Anything To Get a Daisy Seed In A Paper Cup or a Handmade Card For Mother's Day From Your Child". You have to pull on heartstrings because ultimately... they want to sell papers or magazines or up their tv ratings. It's sad but true. Survivors... adjust titles to fit your stories like "The Mother's Day Miracle That Almost Wasn't".

Amy Rademaker
03-29-2008, 09:05 PM
Sarah,

Ok, I'm a criticism queen, so please don't take it personally.

I would change the slant you have on never finding the CDH cause... change the wording a little bit to say that we do not know the cause, and that there is very little research being done etc.

Just my thoughts.

Dawn Torrence Ireland
03-29-2008, 09:37 PM
Oh, I forgot to add that CHERUBS is all caps. Don't ask me why... I was 22 when I started CHERUBS and it sounded like a good idea at the time and now it's our legal name and what we're known by. ;)

Corin Nava
03-29-2008, 10:22 PM
When You Would Give Anything To Get a Daisy Seed In A Paper Cup or a Handmade Card For Mother's Day From Your Child"

I like that idea- maybe if I can find a bit of extra time I will try and send some out!

KateC
03-30-2008, 09:45 AM
Mother's Day (augh...) that is a good idea though Dawn. I guess I could try again. Question though, when we write them, should we write them as if we were writing the article for them and include a headline like you had said? I guess I just find it hard to make Shannon's story appealing.

sarah.deskins
03-31-2008, 08:36 AM
It is hard to make the non survivor stories sound appealing....we either come of as writing simply for pity or angry. I was trying to convey awareness of the day to day for people fighting it but it always come out wrong. theres too much you want to say about it to make it make sense. If i had found a great deal on a diaper wipe warmer Id be in there.....

Katie Mixdorf
04-01-2008, 08:22 PM
Hi Sarah.
My name is Katie and I just found CHERUBS not too long ago. I just wanted to let you know how great I think your letter is. You are right that there is nothing out there to educate people about CDH and it makes me so sad. I was just wondering if you had thought about the American Baby, Pregnancy, and Parenting magazines too. I know I never read BabyTalk but all the others I did while I was pregnant with my son, Shawn. Just a thought.

sarah.deskins
04-02-2008, 12:09 PM
Hi Katie:
haven't read any of those, but im not pickey. I could probably just send the same letter after I find some addresses. Im going to leave this one up for a couple more weeks before I send it.

Patti Bechtold
11-12-2008, 11:28 AM
What a beautiful letter you wrote. I hope and pray your letter gets national attention. Our little angels have purpose.
Patti ~ Angel Autumn Nicole's Meema ( Gramma)

mariluornelas
11-12-2008, 10:02 PM
Yes Yes Yes, I stand to your letter Sarah, I am sure that being on one or all of these magazines will help a LOT, letting people know what our little angels and us the family go thru, before and after birth. I know it is so hard to tell people, and not see pity on their faces, I agree on doing something to change that pity to respect like you said. That is mostly the reason why only a few of my relatives know what we are going thru.
Blessings and let us know if you come up in an article ok?