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Hi I'm trying to find any bilateral cdh survivors, I'm expecting my first child and she has been diagnosed with bilateral cdh. I also want to know for the cherubs who were / are diagnosed with a severe case of cdh what are your living conditions like?
Hi Anjelica, welcome to CHERUBS. I am so sorry you are on this journey with CDH. Having bilateral CDH, it is harder for them to overcome. We do have survivors out there. Where are you doctoring at? Are you at a facility very experienced in CDH care? Is the diagnosis of a bilateral CDH coming after a fetal MRI or just the ultrasounds?
It is so hard to compare two cherubs, for they are truly like snowflakes when it comes to their care. Each case has to be handled differently, for what works for one, will not work for the next. I have seen babies with very severe cases of CDH have little to no lasting complications and I have seen babies with a mild case of CDH, struggle to survive and have lasting health complications. Babies born with CDH can have an array of health complications. Have you checked out our website too, www.cherubs-cdh.org, there is more info. to read there too. We do have a facebook page that is more active you could post questions to, for sometimes our forums are not as active, https://www.facebook.com/cdhsupport/.
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
Hi! I am sorry that you at walking this journey. I am praying for you.
Laura Henderson
Missouri State Representative
Mom to Lucie, LCDH survivor
Prayers for you, your baby, and your family. Thankfully, mine was only on the left and not severe. I hope you get some answers!
Lizz Griffin
40-something CDH survivor, had repair surgery at 4 hours old, no further complications. Youngest of 3. Granddaughter of CDH survivor who was diagnosed at age 90. Mom of 3 beautiful, healthy girls.
Welcome Anjelica, I'm sorry your daughter has been diagnosed with CDH. I have been following a bilateral CDH'ERS journey on FB and she is thriving, Tracy is right though and ever case is different and the doctors wont know everything until she is born. Prayers and strength for you.
Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.
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