Here's a link to our WGN interview that aired on 6/17/13 about CDH, CHERUBS, and my family having to deal with a second CDH diagnosis:
http://landing.newsinc.com/shared/vi...e&VID=24890046
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WGN CDH Awareness Interview
Here's a link to our WGN interview that aired on 6/17/13 about CDH, CHERUBS, and my family having to deal with a second CDH diagnosis:
http://landing.newsinc.com/shared/vi...e&VID=24890046
Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
You all did a FANTASTIC job! I swore I wasn't going to cry, but alas, couldn't help it...
Thank you for ALL the GREAT things you have done for the CHERUBS community & we are 110% with you as this new chapter unfolds! Just like I'm sure you tell your folks, the same holds true from us to you both... If you need to talk, you know where to find us! Our ear is always here for you both! And HAPPY 3rd Birthday to Aiden! He is SUCH a cutie & I'm sure his brother will be just as cute!
Shelly Moore
Shelly Moore
CHERUBS Oregon Representative and Oregon Hospital Angel
CHERUBS Prayer Committee Member
CHERUBS Parental Advisory Board Member (2013-2015)
Email: oregon@cherubs-cdh.org
Facebook: http://www.facebook.com/Teckiemom
Grandmother to cherub angel Jayden, the only son to my born to youngest daughter, Alicia.
Jayden was diagnosed with CDH at his 17 week ultrasound with severe LCDH, stomach, intestines up as well as having polycystic kidneys. He was born February 19, 2010 at 36 weeks gestation.
Jayden spent 7 days on ECMO after which he was working on gaining strength for surgery when his polycystic kidneys started failing at about day 15, totally failing by day 19.
Jayden spent 4 days on dialysis before gaining his wings on March 14, 2010 at age 23 days.
Remembering Jayden - A Family's Journey in Coping with Loss to CDH
http://rememberingjayden.blogspot.com/
Jayden's CDH Story 2/19/10 - 3/14/10
http://www.youtube.com/watch?v=0fKsAsMS_ZA
Here's an even better link to our cover story:
http://wgntv.com/2013/06/17/wgn-cover-story/
Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
You all did a great job. Thank you and you know you are all in our thoughts daily.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (, Chloe ( 6 ) & Elodie ( 3 )
Amazing job, amazing family! Baby R and Aidan are blessed with two wonderful parents.
Thank you for doing this interview and spreading CDH awareness. We all are here for you Neil in the months to come. Even through this difficult journey, you still are supporting others going through the same thing you are...in my book, you and Amy are two very special people. The world needs more people like the two of you.
Praying for Baby R and his miracle.....he is going to follow his brother's footsteps!!
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
It was a great interview.
While I was thankful to not have to go through the CDH journey twice I have been through 2 very difficult pregnancies....our CDH baby (the second event) actually had the higher survival odds.
When we found out about CDH my thoughts were "Unfortunately, we've been through something like this before AND fortunately, we've been through something like this".
No one deserves to go through this once let alone two or three times BUT you know what your capable of and you know you're all made of some pretty tough stuff. My thoughts are with you all.
Thanks everyone...
Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
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