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Thread: Phoenix, AZ local news

  1. #1

    Phoenix, AZ local news

    My husband was told about this video at work that was on the news on Monday night so we found it online. Its the story of a baby with CDH.

    here's the link
    http://www.myfoxphoenix.com/myfox/pa...Y&pageId=3.5.1

    I'm irritated for a couple of reasons...one, because the lady commentating in the video states "CDH is rare, affecting only 1 in 2000 births." that comment thru me off the edge. How can you say that is "rare." two, I tried so hard writing all the local news stations to get Landen's story out there for CDH awareness day and got nothing back. I never gave up. And how did this woman get so lucky? I'm just upset that when you try so hard you don't get rewarded. don't get me wrong, I'm glad that this video aired to spread awareness but just irritated at the same time!!
    Kristin Morrow- mother of Landen James 9/18/07 (LCDH- diagnosed at 19 weeks in utero- CDH repair at 4 days old- chest tube due to secondary pneumothorax for 6 days- HFOV for 8 days- inhaled nitric oxide for 6 days- high flow nasal cannula oxygen for 14 days; battled drug withdrawl & an oral aversion- NICU stay 28 days) http://i102.photobucket.com/albums/m.../cdhribbon.jpg

  2. #2
    I would just keep writing to this station and especially when they ran this story.
    Write them everyday---they should do a story on Landen--show that CDH babies to amazing things!!!!!
    I know it does get frustrating, that you try so hard to spread the awareness and you get nothing.
    Let frustration keep you motivated to keep writing Landen's story and believe me it will pay off!!!! Someone will get the picture - that CDH NEEDS to be brought to the public and STAY in the public eye.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  3. #3
    Don't give up, I'm sure that you will get through to someone eventually but I know how frustrating it is!

    When we asked doctors and medical staff about how common CDH is we were given very different answers. Some even said the word 'rare'. We got told 1 in 5000 to begin with. It's only since reading the info on CHERUBS Australia I see it is 1 in 3000. It is obviously not rare though.

    Anyway let's not let it beat us Kristin, let's keep trying to spread the word!
    Danielle - Lily's mum. Lily 31.07.07- Diagnosed at Birth - LCDH- Repair: 13 hours old- Ventilator: 5 days- NG tube: 7 days- Hospital: 16 days. Also mum to Ethan 21/06/05 http://i256.photobucket.com/albums/h...nLilysmall.jpg

  4. #4
    I guess they have to have a hook for stories...and this child's condition almost going undetected might have been it. Look at it this way...maybe your writing in paved the way for this other story.

    I still think Landon is media-worthy, though, the little cutie!
    Chris Tennyson Married to Matt 12 years Mom to Nicole- born 01/06/07 with LCDH- diagnosed in utero at 18 wks. Has g-tube- reflux- eosinophilic esophagitis (EE)- and scoliosis- but one happy and busy toddler! http://i296.photobucket.com/albums/m...s/IMG_5502.jpg

  5. #5
    Thanks guys for being so positive...and keeping me positive! hopefully someday someone will want to hear Landen's story.
    Kristin Morrow- mother of Landen James 9/18/07 (LCDH- diagnosed at 19 weeks in utero- CDH repair at 4 days old- chest tube due to secondary pneumothorax for 6 days- HFOV for 8 days- inhaled nitric oxide for 6 days- high flow nasal cannula oxygen for 14 days; battled drug withdrawl & an oral aversion- NICU stay 28 days) http://i102.photobucket.com/albums/m.../cdhribbon.jpg

  6. #6
    It is good to see CDH getting some media coverage..... I'm sure Landen will get his moment in the spotlight.... you could start pushing for a story for his first birthday!!!
    Cristin Mama to Graham- RCDH diagnosed at birth. ECMO x2 19 days total- left nephrectomy- two brain bleeds- developmental delays- profound hearing loss- still tube fed but learning to eat!! Mama to Dottie born 02/23/07 big fat healthy baby who LOVES her brother!! www.caringbridge.org/ma/grahamrussell http://cdhmomma.blogspot.com/

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