President Dawn Torrence Williamson, Represents CHERUBS at International CDH Workshop in Rotterdam

This week CHERUBS President and Founder, Dawn Torrence Williamson, will be speaking to CDH surgeons and researchers at the International CDH Workshop at Sophia Children's Hospital in Rotterdam, Holland.   An event to showcase the latest in Congenital Diaphragmatic Hernia Research and results from the CDH Study Group, this is a wonderful opportunity for the world's largest CDH charity to share our information and services and to learn how we can better work with researchers worldwide.

Research being presented this year includes:


Kevin Lally, Houston, USA      
The CDH registry, 8000 patients included: so what?

Jay Wilson, Boston, USA
CDH; my personal “toy”; why I still do not understand CDH

Annelies de Klein, Rotterdam, the Netherlands
Human molecular genetics; to whose benefit?

Zornita Stark:  Chromosome abnormalities detected by SNP  microarray in a cohort of 28 infants with congenital diaphragmatic hernia

Paul Brady: Exome sequencing identifies inherited pathogenic variants for congenital diaphragmatic hernia

Artem Burov: Family bilateral congenital diaphragmatic hernia

Daryl Scott, Houston, USA
Genetic modulated animal models; does it bring anything relevant?

Richard Keijzer, Winnipeg, Canada
The Nitrofen rat model of CDH; still applied toxicology?

Robbert Rottier, Rotterdam, the Netherlands
Pulmonary vascular development: maximal confusion?

Heleen Kool: Pericytes play a central role in pulmonary hypertension and the origin of CDH

Rory Morty: Giessen, Germany
The extra-cellular matrix; a different organ?

Kim Schilders: An in vivo approach to determine the dynamic Sox2 interactome of the developing lung

Joshua Ochieng: Ectopic Sox2 expression reprograms mature airway epithelial cells

Martin Post, Toronto, Canada
Of mice and men: relevant for injury and repair?

Patricia Pereira Terra: MicroRNA miR-200b rescues abnormal branching morphogenesis of nitrofen-induced hypoplastic lung explants

Albert Sgrò: Role of the autoptic examination in CDH

Jan Deprest, Leuven, Belgium
PLUG the lung: is it ethical justifiable?

Jamila Al-Maary: Fetal tracheal occlusion for pulmonary hypoplasia in severe congenital diaphragmatic hernia: A systematic review and meta-analysis of survival outcome

Claudia Hagelstein: Repetitive MR Measurements of Lung Volume in Fetuses with Congenital Diaphragmatic Hernia: Individual Development of Pulmonary Hypoplasia during Pregnancy with Calculation of Weekly Lung Growth Rates

Noriaki Usui: Relationship between the L/T ration and the O/E LHR in fetuses with congenital diaphragmatic hernia

Philip DeKoninck: The use of speckle tracking in cardiac function assessment in fetuses with congenital diaphragmatic hernia

Inga Sandaite: Relationship between herniated liver-to-thorax ratio and lung volumes measured

Alexandra Benachi: Liver position in left-sides congenitaldiaphragmatic hernia

Philip De Koninck: Cardiac assessment in fetuses with right-sided congenital diaphragmatic hernia: a case-controlled study

Patricia Terra: MicroRNA miR-200b expression changes during FETO in CDH – a pilot study

Anouk Deden: Exploring the use of nanoparticles to deliver microRNAs for prenatal therapies

Irwin Reiss, Rotterdam, the Netherlands
Respiratory management: the VICI trial; the wrong choice?

Paola Giliberti: Effects of different ventilation modalities on near infrared spectroscopy in operated CDH infants

Francesca Londolfo: Effects on functional residual capacity (FRC) and lung clearance index (LCI) of surgical repair and pleural effusion in high risk left congenital diaphragmatic hernia (CDH)

Osamu Kimura: The way to shorten the postoperative intubation period in neonates with congenital diaphragmatic hernia

Ulrike Kraemer, Rotterdam, the Netherlands
Pulmonary hypertension: a classical example of lack of knowledge!

Rose Gaiteiro: Prostaglandin E1 use in congenital diaphragmatic hernia (CDH); A 13 year review of outcomes (2000-2012) in a single tertiary paediatric academic health science centre

8.42 – 8.54 am    Neil Patel:  Right ventricular diastolic function measured by tissue Doppler imaging predicts outcome in congenital diaphragmatic hernia

Neil Patel: Benefits of the intravenous phosphodiesterase inhibitors sildenafil and milrinone in infants with congenital diaphragmatic hernia

Tomohiko Tanaka: Evaluation of diastolic disorder using diastolic wall drain (DWS) before and after radical surgery for congenital diaphragmatic hernia

Ryo Ishii: The impact of intravenous administration of prostacyclin for congenital diaphragmatic hernia

Tadahura Okazaki, Tokyo, Japan’
Clinical strategies: all wisdom comes from the East?!

Irma Capolupo: SNAP-II score correlates with the outcome of infants with congenital diaphragmatic hernia; a single center, prospective study

Mary Brindle: CDH mortality score: a validated clinical prediction rule to stratify patients with congenital diaphragmatic heria (CDH) based on their risk of mortality

Artem Burov: Intensive care of newborns with congenital diaphragmatic hernia in the perinatal center; Russian experience

Kouji Nagata: The current profile and the future perspectives of congenital diaphragmatic hernia – A nationwide survey in Japan

Thomas Schaible, Mannheim, Germany
ECMO: an expensive way to die?

Pietro Bagolan, Rome, Italy
Surgical approaches: an art without evidence?

Paul Losty: A nationwide survey of prosthetic patch utilisation in
newborns with congenital diaphragmatic hernia

Karin Zahn: Single centre results and patients selection criteria for thoracoscopic repair of congenital diaphragmatic hernia in neonates

Tadahura Okazaki: Thoracoscopic repair for congenital diaphragmatic hernia in neonates: a single center study

Paolo De Coppi, London, UK
Tissue engineering; the future of repair?

Luca Urbani: Diaphragm remodeling is promoted by an acellular matrix in a muscle-specific spinal muscular atrophy mouse model

Hanneke IJsselstijn, Rotterdam, the Netherlands  
Structured follow up; does it help the individual patient?

Daphne Mous: Gentle ventilation in congenital diaphragmatic hernia patients: Long-term pulmonary outcome

Laura Valfre: Surgical outcomes in congenital diaphragmatic hernia survivors: Long term-follow up

Laura Valfre: Patching the diaphragm affects orthopaedic outcome: A five years follow-up

Paul Losty: Outcomes following prosthetic patch repair in newborns with congenital diaphragmatic hernia – A single centre experience

Neil Patel: Sildenafil weaning post-discharge in congenital diaphragmatic hernia

Marlous Madderom, Rotterdam, the Netherlands
Congenital diaphragmatic hernia with(out) ECMO: impaired development at 8 years, the disease or therapy to blame?!

Julia Gunn: Two year neurodevelopmental outcome following
neonatal repair of congenital diaphragmatic hernia
Karin Zahn: Long-term results of ECMO therapy in neonates with congenital diaphragmatic hernia

Kirsten Lyons: The effects of a sustained flexed position in supine on a CDH infant displaying reduced spontaneous movements against gravity: a case report

Monique van der Cammen: Motor performance in children with congenital diaphragmatic hernia treated with neonatal extracorporeal membrane oxygenation; a nationwide evaluation

Daphne Mous: Congenital diaphragmatic hernia patients treated with ECMO are at risk for chronic malnutrition into childhood

Beth Haliburton: Energy intake in infants with congenital diaphragmatic hernia (CDH)

Meike Weidner: MR quantitative pulmonary perfusion imaging at 3.0 T of 2-year-old children after congenital diaphragmatic hernia repair

Marjolein Spoel: 3He MRI in young adults with congenital diaphragmatic hernia: alveolar size differences between the IPSI- and contralateral lung
 


Also speaking is Onno Zwart, founder of En Stitching Hernia Diafragmatica, a Netherlands based CDH charity that was also founded in 1995.  Onno and his wife, Sigrid, have lost 3 cherubs to CDH and are long time members of CHERUBS.  In 2000, Onno visited the United States to attend CHERUBS first conference in Orlando (photo below), the first of many other CDH charity leaders we have welcomed to our events.  13 years later, Onno and Sigrid are hosting us for the CDH Workshop in Holland.

We are very grateful for this speaking opportunity and look forward to sharing information with CDH families, as well as our speech, when we return.

 CHERUBS 2000 CDH Conference

 Onno Zwart

  Onno and Dawn at Disney, 2000

(we will get better photo this year)

CDH Leaders in San Antonio, 2009

No One Knows

(repost from 2008)



No One Knows....
by Dawn Williamson

No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.

No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.

No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.

No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.

No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.

No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.

No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.

No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.

No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.

No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.

No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.

No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.

No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.

No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.

No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.

No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.

No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.

No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.

No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.

No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.

No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.

No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.

No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.

No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.

No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.

No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.

No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.

No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.

No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.

No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.

No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.

No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.

No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.

No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.

No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.

No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.

No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.

No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.

No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.

No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.

No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.

No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.

No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.

No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.

No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.

No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.

No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.

No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.

No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.

No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.

No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.

No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.

No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.

No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.

No one knows what it's like to lose your child - unless they have been there themselves.

No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.

No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.

No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.

No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.

No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.

I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.

And I know over 3400 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

CHERUBS 2009 Congenital Diaphragmatic Hernia Conference Lectures

It took a while, but our 2009 CDH Conference Lecture videos are finally up!

CHERUBS 2009 International Member Conference

San Antonio, TX

July 23-25, 2009

Our 2009 International Member Conference for families affected by CDH was a wonderful success!


We had 17 families and 8 organizations represented from 4 countries. It was truly an international CDH conference. One person called it a "CDH Summit" but we hate to use the word "summit" as that is a meeting of peace of countries / organizations who can't get along - and we most definitely all get along! :) It was a "CDH Conference" - for and about Congenital Diaphragmatic Hernia. It included CDH Research, Awareness and Support.

It began on Wednesday with our Pizza Party and Introductions. We presented Danielle Kessner of CHERUBS Australia with a cherub statue. In 2000, CHERUBS members presented Dawn with a crystal statue. Now that CHERUBS Australia and CHERUBS UK have their own non-profit status and president, it is fitting that all 3 have the statue. Brenda Lane of CHERUBS UK received hers on Thursday as they missed the Pizza Party. Also at the Pizza Party, the new CDH song "I'll Never Let You Go" by The Jammies was unveiled. We will post that video in a few days.




Our hotel was just beautiful and Chris Arango of the San Antonio Holiday Inn Select was wonderful. There were a few issues but he fixed them ASAP. We were very impressed with them!

On Thursday, we were blessed with incredible guest speakers!!! Daryl Scott MD and David Pearson from Baylor's CDH Research Team were wonderful! Their presentation was very informative and the parents were able to ask lots of questions. We all learned quite a bit about genetics and CDH!

Then Dr. Kevin Lally presented from the CDH Study Group and we learned about the history of CDH, the future of CDH and all the research that the group is doing. And Pam Lally was so sweet to provide us with the latest (unpublished) survey tabulations. The parents were able to ask more questions about ECMO, CDH repair and survival rates. It was extremely informative.


On Friday, Drs. Meaghan Russell and Mauro Longoni from Boston Children's spoke on their CDH Research Study. We learned even more about CDH and genetics and how they use mice to create diaphragmatic hernias. The parents got to ask more genetic questions. They bought us copies of CDH News, their newsletter, as well and it featured a photo of last year's conference! :)


On Saturday and also on Friday we had round-table discussions and parents had the opportunity to talk to each other about their stories and various topics dealing with CDH. We all learned a lot from each other and we laughed, cried and shared so much. The doctors sat in on the discussions and learned from parents just as we learned from them. It was such a blessing to have the opportunity to do this.





And on Saturday, the kids learned a little song about CDH and performed it for us. Video to come soon!


Our conference ended each day at noon so that families could sightsee and socialize with other CDH families. Families went to the Alamo, Sea World, the River Walk, rodeos, shopping and more. Often, you would find families convening at the hotel swimming pool. The doctors fit right in and 2 of our Board Members had dinner with Meaghan and Mauro and had the opportunity to ask them lots of questions face-to-face. Videos will be posted soon!



This conference was also a milestone for CHERUBS - it was the first time the Presidents of all 3 CHERUBS have met in person. Dawn Williamson of CHERUBS (USA), Danielle Kessner of CHERUBS Australia and Brenda Lane of CHERUBS UK came together for the first time this year. We also welcomed Kim Richards of The Olivia Raine Foundation and Michelle Brown of Little Lambs. Not to mention doctors from 3 more CDH studies - Kevin and Pam Lally of the CDH Study Group, Meaghan Russell and Mauro Longoni of Mass General / Boston Children's CDH Study and Daryl Scott and David Pearson from Baylor College's CDH Study. All 8 organizations are members of ACDHO, The Alliance of Congenital Diaphragmatic Hernia Organizations - a group of CDH organizations and research centers dedicated to working together to help support, protect and advance the CDH community. 8 CDH organizations all together at once to help each other and CDH families!!!!

Talking to the other members of ACDHO and to the families we got such great advice on how else we can help the CDH community. It was wonderful to talk to the other organization leaders and get their opinions on so much and learn about services that they offer, rules they give their volunteers, how they deal with certain situations, etc. Listening to the families during the round-table discussions and listening to the questions that they asked the doctors, we learned what topics they really want to know more about and want to see us post more about. We learned so much that we will all bring forward to the CDH community!

We want to say thank you to our guest speakers and to Karen Myers, a member who went above and beyond to make this conference possible. We'd also like to thank Barbara Wagner, who showed what a CHERUBS volunteer is all about with all she's done to help us. And to our sponsors and volunteers:

Conference Volunteers
A very, very special thank you goes to the following individuals:

Alec Myers – in memory of Kaleigh Myers
Barbara Wagner – in honor of Logan Wagner
Chad Knudsen
Charles Hess – in honor of Adam Hess
Chris Arango
Chris Meats - in honor of Ian Meats
Craig Williamson – in memory of Shane Torrence
Dave Holt - in honor of Braden Holt
Dave Lipsit
Dawn Williamson – in memory of Shane Torrence
Fernanda Arce – in honor of Juan Pablo Arce
Jean Williamson – in memory of Shane Torrence
Jennifer Brown – in honor of Adrian Brown
Kara Hess – in honor of Adam Hess
Karla Holt – in honor of Braden Holt
Karen Myers - in memory of Kaleigh Myers
Kevin Lally, MD
Kimberly Richards – in memory of Olivia Raine Richards
Kimberly Switzer – in memory of Asher Switzer-McCoy
Lynne Brogdon – in honor of Baer Brogdon
Pam Lally, MD
Penny Campsey – in honor of Cole Campsey
Primerica
Tara Hall - in honor of Brandon Hall
The Jammies

We would like the following for their generous donations:

Chuck and Kara Hess, in honor of Adam Hess
Jennifer Brown, in honor of Adrian Rivera
Karen Myers, in memory of Kaleigh Myers
Kevin and Barbara Wagner, in honor of Logan Wagner
Kimberly Richards, in memory of Olivia Raine Richards


Our conference concluded on Saturday, much to everyone's sadness. There were a few tears saying good-bye. We hope to all see each other again next year in San Francisco at our 2010 CDH Conference - along with lots of new families.


It truly was a wonderful week. Hopefully everyone left with more information on CDH, new friends and knowing that we are a big CDH family working together to help them and all those affected by Congenital Diaphragmatic Hernia.

2009 CHERUBS Conference Lectures


The quality isn't exactly professional but we try hard to bring you as much information as possible through video!  



Kevin Lally, MD
(International CDH Study Group)
The History and Future of CDH

Part 1 - http://www.youtube.com/watch?v=E0OBJPRBUPo  view the rest of the videos at http://www.cherubsconference.org/2009.php Meaghann Russell, MPH and Mauro Longoni, MD (MassGeneral CDH Clinic, Boston, MA) CDH and Genetics Part 1 - http://www.youtube.com/watch?v=QhKc0K-pNO0  view the rest of the videos at http://www.cherubsconference.org/2009.php Daryl Scott, MD and David Pearson (Baylor Genetic CDH Study Program) CDH and Genetics   Click here to download slide show

Congenital Diaphragmatic Hernia Hospitals - http://www.cdhhospitals.org

CHERUBS new web site:

http://www.cdhhospitals.org

includes: our Adopt A Hospital Program, a list of CDH clinics, ECMO Center, Fetal Center and members of the International CDH Study Group

CDH Adopt A Hospital Program

• Program Mission

• Current Adoption List
  

• ACDHO Listed CDH Research Hospitals

• ECMO Centers

• Adopt A Hospital Now

CHERUBS Adopt A Hospital Program

Provide Information & Support To Families Affected By Congenital Diaphragmatic Hernia

Would you like to help families affected by Congenital Diaphragmatic Hernia? Would you like to do something in honor or in memory of a cherub? CHERUBS has created a new program that will soon be helping CDH families across the country.

How does it work?  You make a $100 donation to CHERUBS and we order and put together the materials and send them to the hospital in honor / memory of your cherub.


CHERUBS Adopt A Hospital Care Package Includes:

• 1 copy of "Stories of Cherubs" Volume I
• 1 copy of "Stories of Cherubs" Volume II
• 1 CDH awareness mini-poster
• 20 Parent Reference Guides
• 30 CHERUBS CDH Info Brochures
• 40 CDH Awareness Ribbon Pins
• 10 copies of our latest newsletter

Each item (except the CDH ribbon pins) is labeled with a sticker that says "Donated in honor of ________" or "Donated in memory of _________"

These items are then available to all CDH parents admitted into these hospitals. Upon joining CHERUBS, new parents will soon receive more information and support through our CHERUBS H.O.P.E. program.

These items are an invaluable source of support and information for families affected by Congenital Diaphragmatic Hernia. Because there are so many hospitals, CHERUBS cannot possibly afford to donate to all hospitals and we are inviting our members and the general public to help us to help CDH families.

Your donation is tax-deductible!

 

CHERUBS Adopt A Hospital Program

http://www.cdhsupport.org/donate/hospitaladopt.php

Would you like to help families affected by Congenital Diaphragmatic Hernia? Would you like to do something in honor or in memory of a cherub? CHERUBS has created a new program that will soon be helping CDH families across the country.

How does this work?

You make a $100 donation to CHERUBS and we order and put together the materials and send them to the hospital in honor / memory of your cherub.

CHERUBS Adopt A Hospital Care Package Includes:

1 copy of "Stories of Cherubs" Volume I
1 copy of "Stories of Cherubs" Volume II
1 CDH awareness mini-poster
20 Parent Reference Guides
30 CHERUBS CDH Info Brochures
40 CDH Awareness Ribbon Pins
10 copies of our latest newsletter

Each item (except the CDH ribbon pins) is labeled with a sticker that says "Donated in honor of ________" or "Donated in memory of _________"

These items are then available to all CDH parents admitted into these hospitals. Upon joining CHERUBS, new parents will soon receive more information and support through our giftbag program.

These items are an invaluable source of support and information for families affected by Congenital Diaphragmatic Hernia. Because there are so many hospitals, CHERUBS cannot possibly afford to donate to all hospitals and we are inviting our members and the general public to help us to help CDH families.

Your donation is tax-deductible!

The above photos of are the Adopt A Hospital kit created in honor of Braden Holt that has been sent out to CHOP. You can see the labels on each item and how everything but the poster fits neatly in a nice box. Families who Adopt A Hospital in honor or memory of their cherub can rest assure that CHERUBS presents nothing but professional materials in a professional manner to help CDH families.

The following hospitals have been adopted!

• Saint Joseph's Hospital, Denver, Colorado - in memory of Kasey Colvin
• University of Kansas Medical Center - in memory of Michael Joseph Skaggs
• OSF St Francis Medical Center - in honor of Christopher Strode
• The Children's Hospital at St. Francis - in honor of Laney Kate Daniels
  
• Palmetto Health Richland - in honor of Abigail Taylor Long
• Our Lady's Hospital for Sick Children, Crumlin, Dublin - in honor of Aoife Hopkins
• Duke University Medical Center - in memory of Shane Torrence
• University of Alabama Birmingham Hospital - in memory of Caleb Cox
• University of North Carolina, Chapel Hill - in memory of Dawson Gabriel Martie
• University of Virginia - in memory of Debra Jones and in honor of Cole Campsey
  
• Wilford Hall Med Center - in memory of Kaleigh Myers & in honor of Raelyn Turner
• National Children's Hospital - in memory of Amanda & Nicholas Slavin
• Childrens Hospital of Philadelphia - in honor of Braden Holt
• Toronto Children's Hospital - in memory of Ethan William James Marchand
• University of Michigan - in honor of Logan Wagner & Declan Armstrong
• Seton Hospital (Austin, TX) - in memory of Cody Travis Streetman
• St. David's Hospital (Austin, TX) - in memory of Cody Travis Streetman

Items donated in memory of Caleb Cox being delivered to the University of Alabama at Birmingham

If you would like to Adopt A Hospital, please visit

http://www.cdhsupport.org/donate/hospitaladopt.php

Congenital Diapraghmatic Hernia: Outcomes

Description of the outcome possibilities for a fetus with Congenital Diapraghmatic Hernia (CDH). Presented by Doug Miniati MD, Assistant Professor, UCSF Fetal Treatment Center

Congenital Diapraghmatic Hernia: State of Current & Future Research

The state of current research into Congenital Diapraghmatic Hernia (CDH) and what possible research opportunities lay in the future. Presented by Doug Miniati MD, Assistant Professor, UCSF Fetal Treatment Center.