OH yes, they have the "SIGN"
LOL
Sorry, Lynne, it's kind of hidden in this thread. Meaghan's number is (617) 726-0828. She's the coordinator, a phD student.
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
Thanks Chrissy!
cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg
Sam and I are really interested in doing some type of chromosomal study, but the farthest that we can go is Seattle. Do you have any references. I want to do genetic counseling, but if I can be part of a study like that for free, i want to do it! thanks
shanell
Shanell Browand- CHERUBS Idaho State Representative, mommy to Ayda Rose Browand, our one and only (LCDH- 4 CDH surgeries, 2 surgeries to remove fluid from around her heart, has severe hearing loss, asthma, febrile seizures, weak immune system)
Shanell, give Meaghan a call - she'll mail the stuff and it's free.
BTW, Happy Birthday, Shanell!!!!!
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.
The last posting on this was 2008 - Does any one know if the study is still open? I vaugely remember before Jayden was born they were talking about some of his cord blood would be saved for some research but I don't know if it was this one.
As for the article that is VERY interesting as I have a theory that the reason I & my siblings & our children & grandchildren have had all the weird anomalies we do (CDH is only 1 of a long list list of weird & wacky) is due to my dad's exposure to Agent Orange (dioxin) & my mom's exposure to dioxin in the cotton fields in Arkansas growing up. With each generation more oddities keep showing up. If I'm right the havok it played with our genes could go on for such a long time. If this article's theory proves out true it could be even longer. Oh my!
Last edited by ShellyMoore; 11-09-2011 at 08:54 PM.
Shelly, these studies/research is ongoing. I had the chance to hear both the reseearchers (I have them listed below) at last year's CHERUBS conference in July. Very interesting what they presented and the work they are doing trying to identify if genes play a role in CDH. Both researchers will mail you the info. and you mail back all the samples and paperwork and it is free to participate. I didn't know you had another grandbaby with CDH. Has your family ever done any genetic counseling? I would love to have our family done, but just haven't done it.
Both Meaghan and Daryl are super nice individuals, here is there contact info.:
Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachussetts
Drs. Patricia Donahoe and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator, at (617) 726-0828
mrussell@partners.org
Identifying Genes Which Cause CDH
Baylor College of Medicine
Daryl Scott, M.D., Ph.D.
Department of Molecular and Human Genetics
Baylor College of Medicine
One Baylor Plaza, MS BCM225
Houston, TX, 77030, U.S.A
Phone: 713-203-7242
E-mail: dscott@bcm.edu
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
We have had some genetic testing but only for the Stickler syndrome & Alicia's Gitelman's syndrome but not the CDH as of yet. Alicia & I would be interested in it.
I'm gonna check in with Alicia's doctors & see if either of these are studies her & Jayden's samples became part of. We would be happy to see what can be done to spare the sadness we've endured.
Last edited by ShellyMoore; 11-09-2011 at 08:55 PM.