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Thread: Matt came across this

  1. #1

    Matt came across this

    Matt's addicted to the news blurbs he gets on his phone and found this article.

    Subject: St. Louis hospital to study birth defect

    Sent from Express News
    ST. LOUIS - A top children's hospital wants to improve the survival rate of
    infants born with a birth defect that many families have never heard of
    until their child is diagnosed.

    Dr. Brad Warner, surgeon-in-chief of St. Louis Children's Hospital, said
    Tuesday that he and others plan research to better understand the condition,
    known as CDH, or Congenital Diaphragmatic Hernia. One in 2,000 babies is
    diagnosed with the disease, doctors say. Half of those don't live to their
    first birthday.

    The condition occurs when the diaphragm, which separates the chest cavity
    from the abdomen, does not completely form in the womb. The contents of the
    belly migrate to the chest, which keeps the lungs from developing properly.

    Eight babies at the St. Louis hospital died last year from the condition.

    Doctors at St. Louis Children's Hospital say they're part of a national
    database registry to collect and track information on children with the
    condition. They plan to recruit faculty candidates that are able to explore
    fetal surgery intervention and are working to collect DNA for analysis.

    Treatment for the birth defect varies.

    Many are stillborn. Babies who die from the birth defect usually have
    insufficient lung tissue to survive, or develop hypertension in the blood
    vessels of the lungs. Medications to lower blood pressure in the lungs lower
    the baby's overall blood pressure, which can be problematic.

    Of those who live, some are in distress from the moment the umbilical cord
    is clamped; others are OK for their initial hours of life, then get worse. A
    third group, which is the most uncommon, initially looks good, but later
    exhibits signs, such as bowel sounds in the chest, that reveal the
    condition.

    In some cases, doctors have performed surgery on pregnant women and their
    fetuses to try to address problems before a baby is born, but those
    procedures have risks. Children with CDH can grow up to be healthy adults.

    Doctors say they hope to better understand predictors of good and bad
    outcomes for babies with the condition, as well as how to address the many
    complications that can arise.

    ----



    By BETSY TAYLOR Associated Press Writer
    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

  2. #2
    One of Grayton's doctors, Jackie Saito, is now at Children's Hospital of St. Louis.

    Very interesting article....thanks for sharing!
    Grayton Karleigh Creekbaum diagnosed at birth on 5/09/08 with RCDH and she went to heaven on 6/22/08. She also had Pulmenary Hypertension- problems with blood clotting factors- and she went through 5 EMCO machines which got her the title of "Queen of the ECMO" by the head nurse - hence the boa and crown! bowel- liver- small intestines up with gortex repair had her repair while on ECMO on ECMO for 44 days (her entire life) Nitrate for 30- vent for 34 days- oscilator for 10 days Our Blog: www.thecreekbaums.blogspot.com

  3. #3
    Thanks for sharing that Chris!! That is a very interesting atricle!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  4. #4
    Senior Member karahess's Avatar
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    Dr. Warner is AWESOME!! He originally was at Cincinnati Children's.
    Kara- mom to Aaron (8-30-03) and Adam- LCDH (8-7-06). Gastric Volvulus at 7 months old; Borderline Chiari Malformation; reherniation- bowel blockage and intestional malrotation at 26 months old; Apraxia of Speech - neurological speech disorder; Auditory Processing Disorder; Asthma; and frequent headaches.

  5. #5
    I saw the news coverage of this conference. I have the link if any of you would like to watch it. This was done in relations to CDH Awareness day (BOH March 31st) and the BOH foundation donating $16,000 to research at the St. Louis Children's Hospital for CDH research.
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  6. #6
    It was donations from 2 or 3 families to the hospital - I don't know why they went through BoH and didn't just donate directly to the hospital? So technically, BoH didn't donate but it was used to promote their trademarked CDH awareness day. And I'll keep my personal opinions to myself.

    It is great CDH Research is being done and Dr. Warner is wonderful and God bless those families who donated!!!!!!!!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  7. #7
    I noticed on the check they listed the 3 families in the corner of the check and think that is wonderful they were able to raise that much money to be donated to CDH research!! There needs to be more research done on CDH. They should have given those 3 families more recognition in that TV/video conference I watched though. I side with you too Dawn and will keep my personal opinions to myself.
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  8. #8
    Thanks for sharing.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  9. #9
    Dr. Warner is a great doctor. He was of the head surgeon at Children's when we were there with Chase. He is a very nice person as well as a great doctor.

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