CHERUBS 2008 CDH Conference Guest Speakers - Priscilla Chiu, MD

CHERUBS 2008 International Member Conference for families affected by Congenital Diaphragmatic Hernia.

Dr. Priscilla Chiu's (Sick Childrens, Toronto, Canada) speech on The Surgical Repair of CDH

This only includes the speech. This does not include questions, comments or dialogue with members (you have to attend our conference to hear and participate in that!).


Part 1



Part 2



Part 3



Part 4

For information on this year's conference you can visit http://www.cherubsconference.org

For information on CHERUBS and CDH please visit http://www.cdhsupport.org

The Latest in Congenital Diaphragmatic Hernia Research

Below are just a few of the abstracts presented at the 2009 APSA Conference. We were fortunate enough to be able to attend as this new research data was presented. And equally as fortunate to be able to talk to many of the doctors who conducted this research.

As you read the following abstracts please remember that every CDH baby is different. This information is posted for education purposes only and does not reflect the potential outcome of any specific CDH case.

Click on the pages to enlarge them.

The Effect of Prenatal Diagnosis On The Contemporary Outcome of Congenital Diaphragmatic Hernia




Outcome Following Muscle Fap Versus Prosthetic Patch Repair for Large Diaphragmatic Hernias



Patch Repair Is Associated With Significant Morbidity and Mortality In Infants With Congenital Diaphragmatic Hernia (CDH)




Establishment of Pre-Treatment Blood Gas Targets Improves Survival In Infants With Congenital Diaphragmatic Hernia (CDH)



Prenatal Pulmonary Hypertension Index (PPHI): Novel Prenatal Predictor of Several Postnatal Pulmonary Artery Hypertension In Congenital Diaphragmatic Hernia



Long-Term Outcomes In 93 Survivors of Congenital Diaphragmatic Hernia (CDH)

Long Term Support for CDH

One of the new CDH families wrote a blog post last week that really got me thinking. She (rightfully) complained that she was not receiving enough support after bringing home her cherub from the hospital. That feeding issues and therapies were hard and no one was talking about it and she had no where to turn. That the groups she was in just talked about the pregnancy and time immediately after birth and then she was left on her own to go from there. I could feel her frustration and loneliness in her post. I could feel it, because I've been there. And that's what got me thinking.

This mom isn't an active member of CHERUBS. She's one of the new families swayed by drama who've been told to stay away from CHERUBS. Why? Because we're one of the groups standing up against those groups who are hurting families. There are dozens of new and expectant parents who are found through blog searches and "befriended" and "recruited" to join "CDH support groups". New and expectant parents who are at their most vulnerable, already dealing with CDH and in the midst of thier diagnois or grief and caught up in those agendas, drama, slander and the lies told to keep them away from information and support - that they obviously desperately need. It's shameful and it's sickening and it's sad and it breaks my heart that the CDH road is being made harder for families than easier. Those parents and children deserve so much better!

And then I realized we're partly to blame for this as well. We don't post what we offer that much. And we offer a ton - more than all the other CDH organizations put together and for 3 times longer. BUT, we work with 90% of the other CDH organization to make life easier for these families! It's a global group effort through ACDHO and we've helped 1000's of CDH families over the past 14 years.

When my son was born there was NO SUPPORT. No internet, no googling "Congenital Diaphragmatic Hernia", no organizations - nothing. When we bought him home, we had no one to turn to. When were in the hospital we had no one to turn to except one other CDH mom. She was a godsend and I love her like a sister to this day - but she will be the first to tell you that she can only give advice and information about the neonatal period. She lost her son at just over a month old - her experiences are very limited and heart-breaking but she can explain about ECMO and CDH repair and vent weaning and staph infections and pneumonia. But she will tell parents - as she told me when Shane came home - that she doesn't have the experiences to draw accurate advice on how to deal with a CDH baby who lives for a longer time or who does come home. She was all the support I had - and she couldn't help me.

So I struggled on my own - frustrated, alone and crying almost daily because it's completely overwhelming to take care of any new baby - much less one who could stop breathing at any moment or for who feeding is a huge ordeal. Don't get me wrong - I was so BLESSED to bring him home and I knew that - but being home with a sick baby without support was horrible. What I wouldn't have given to have 1 other CDH parent who had walked in my shoes to tell me it was OK to be upset or disappointed. That it was OK to feel frustrated when my cherub wouldn't eat. Or it was OK to cry because we couldn't do the things other parents of healthy children took for granted - like just going to church or shopping around crowds, or not having therapists and nurses in our house all the time, etc. But there was no one.

That's why CHERUBS was founded. Not in memory of one child. Not in some misguided, grief-stricken, angry quest. Not in some popularity contest. Not in some agenda to profit off of sick children. There was only 1 reason why CHERUBS was founded - to help other CDH families so that no one felt alone and every CDH parent had the information and support that they needed - along with advocating for awareness and research.

At CHERUBS parents talk about Long Term issues associated with CDH. Information and advice given by parents who have walked in the same shoes - not from people who have read about it in other people's stories. We don't just focus on birth and CDH repair and getting the babies home. We focus on the whole picture - pregnancy, birth, neonatal and beyond. We have forums for support for feeding issues and developmental delay - things often dealt with for years after coming home. We have forums for older survivors - some of our survivors have graduated high school, college, gotten married and had babies of their own - lives after CDH that is barely charted territory and these survivors especially need support. We also offer support for just the dads and siblings, for grandparents, for other birth defects or genetic issues.

And we offer support to ALL CDH families. Grieving parents know we are ALWAYS there for them, through the deaths and funerals, long after their families and friends have forgotten their cherub's birthday and angelversaries - we still remember. We support those grieving parents who made all decisions - whether they chose to terminate or go to term - whether they chose extensive medical support or letting their child go at birth. You will never see pro-life or pro-choice issues raised at CHERUBS. We offer parents all the information on CDH possible - so that they can make informed decisions. Not all CDH parents have that information and regret the decisions that they make. We are there to offer ALL CDH families support - not to make personal judgments or religious condemnations.

At CHERUBS there is A LOT of support - usually over 100 posts each day on all of these topics!

At CHERUBS we recommend families get support from as many different sources as possible. From as many different CDH groups as possible. We work hard to have their best interests at heart - to do what's right for these children and their families.

No one dealing with CDH ever has to deal with any CDH related issue alone again. And in reaching our goal that we set when founded - CHERUBS is a success. Helping families is our goal and will always be.

Videos of Congenital Diaphragmatic Hernia - Documentary on CDH

Along with the video of a cherub this week, we're including this educational documentary. It comes in 2 parts. It is very interesting, very creative - but there is an autopsy photo so this video might not be for everyone. Thank you David and all the actors and people involved for working with CHERUBS and allowing us to use this video!!!

How well do you know the facts about Congenital Diaphragmatic Hernia?

How well do you know the facts about Congenital Diaphragmatic Hernia?


1.
What does CDH stand for?
* Cat Dog Horse
* Congenital Diaphragmatic Hernia
* Congenital Diaphragmatic Hernia

2.
What is CDH?
* A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.
* A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.
* A medical disease

3.
What is the survival rate for CDH?
* 50% - 60%
* 25%
* 70%

4.
Which is more common, Left-sided CDH or Right-sided CDH?
* Left-Sided
* Neither
* Right-Sided

5.
What organs are / can be herniated in CDH?
* Diaphragm, Lungs, Stomach, Liver, Intestines, Spleen, and more
* Any organ in the body
* Diaphragm, Lungs, Stomach
6.
What are the odds of a baby having CDH?
* 1 in 2000
* 1 in 5000
* 1 in 2500

7.
What complication is most lethal to CDH babies?
* Small Lungs
* Infection & Pneumonia
* Poor Lung Function

8.
Approximately how many babies are born with CDH every year in the U.S.?
* 500
* 1600
* 1000

9.
Approximately how often is a CDH baby born in the world?
* Every day
* Every hour
* Every 10 minutes

10.
Which is NOT a form of CDH?
* Morgani
* Reynaldi
* Bochdalek

11.
Which gender has a slightly higher survival rate of CDH?
* Female
* Male
* Neither

12.
When was CDH first described in medical books?
* 1575
* 1887
* 1903

13.
In what year was the first successful CDH repair on an infant?
* 1946
* 1893
* 1973

14.
In what year was ECMO (Extracorporeal Membrane Oxygenation) first used on a CDH patient?
* 1988
* 1976
* 1991

15.
In what year was the world's first CDH Research Group (The CDH Stud Group) and the world's first CDH Support Group (CHERUBS) both founded?
* 1995
* 1999
* 2002

16.
What causes Congenital Diaphragmatic Hernia in babies?
* No one yet knows.
* Pesticide exposure during pregnancy.
* Drug exposure during pregnancy.

17.
Which of these complications are most common with many CDH survivors?
* Pulmonary Hypertension, Allergies, Feeding Issues
* Pneumonia, Allergies, Asthma, Developmental Delay
* Pneumonia, Pulmonary Hypertension, Allergies, Asthma, Feeding Issues, Developmental Delay

18.
Can you tell what a CDH survivor looks like if you saw one in public?
* They have a funny look to them
* They look like everyone else.
* Only if they had their shirt off and you saw a scar.

19.
Which one of these procedures is more common than the other 2 in 2008 for these children?
* Trachel Occlusion
* Tracheal Ligation
* In Utero Repair

20.
What does ACDHO stand for?
* Alliance of Congenital Diaphragmatic Hernia Organizations
* American Congenital Diaphragmatic Hernia Organization
* American Congenital Diaphragmatic Hernia Office


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Answers Below (don't cheat!):









1. What does CDH stand for?
Congenital Diaphragmatic Hernia

2. What is CDH?
A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.

3. What is the survival rate for CDH?
50 - 60%

4. Which is more common, Left-sided CDH or Right-sided CDH?
Left-Sided CDH

5. What organs are / can be herniated in CDH?
Diaphragm, Lungs, Stomach, Liver, Intestines, Spleen, and more

6. What are the odds of a baby having CDH?
1 in 2500

7. What complication is most lethal to CDH babies?
Infections & Pneumonia

8. Approximately how many babies are born with CDH every year in the U.S.?
1600

9. Approximately how often is a CDH baby born in the world?
Every 10 minutes

10. Which is NOT a form of CDH?
Reynaldi

11. Which gender has a slightly higher survival rate of CDH?
Female

12. When was CDH first described in medical books?
1575

13. In what year was the first successful CDH repair on an infant?
1946

14. In what year was ECMO (Extracorporeal Membrane Oxygenation) first used on a CDH patient?
1976

15. In what year was the world's first CDH Research Group (The CDH Study Group) and the world's first CDH Support Group (CHERUBS) both founded?
1995

16. What causes Congenital Diaphragmatic Hernia in babies?
No one yet knows.

17. Which of these complications are most common with many CDH survivors?
Pneumonia, Pulmonary Hypertension, Allergies, Asthma, Feeding Issues, Developmental Delay

18. Can you tell what a CDH survivor looks like if you saw one in public?
Only if they had their shirt off and you saw a scar.

19. Which one of these procedures is more common than the other 2 in 2008 for these children?
Trachel Occlusion

20. What does ACDHO stand for?
Alliance of Congenital Diaphragmatic Hernia Organizations

"Stories of Cherubs" book

"Stories of Cherubs" Vol. II will be out this weekend! Last minute submissions are being accepted until Wednesday. If you aren't sure if your story will be included, you can check over on our forums for the list of stories that we have received. http://www.cdhsupport.org/members/viewtopic.php?p=34480#34480




Below is a list of the stories that were included in "Stories of Cherubs" Vol. I, which is still on sale at cafepress! http://www.cafepress.com/cherubs.91971767

Aileen Iris Adame
Ashley Kaitlyn Abel
Logan Andrew Alexander
Gauge Michael Allen
Cloudey Rae Anders
David Valera Angil
Faith Marie Atkins
Nathan Presley Bacon
Joshua Bruce Baker
Nathan Balistreri
Chloe Gabrielle Barbee
Jack Barkley
Angela Barricklow
Joshua Bazian
Dominick Aaron Beach
Spencer James Bean
Chella Jane Bell
Kaylee Lynn Bentz
Jaila Berrios
Caitlin L. Blair
Joel Archie Jed Abel Blakley
James Zachary Blaylock
Kailyn Brooke Bost
Amanda Bracher
Madeline Hope Bracken
Alyssa Nicole Bradshaw
Tara'mais J. L. Brown
Anneliese Mae Browning
Tyler Bruce
Nicholas Michael Brucher
Patrick Neil Bryant
Becky Buist
Ian Raymond Bunch
Michelle Button
Corkins Cadence Skyer
Nicholas Calandro
Brady Joseph Campbell
Tyrell James Campbell
James Chalk
Matthew Cheffer
Richard Cheslock
Elizia Chicoine
Kayla Mae Michele Childress
Alisha Lemuela Chiteme
Emily Nicole Clark
Jamie Clarke
Nathan Theo Clarke
Matthew Clemens
Trinity Ann Coleman
Daniel Collett-Arquelles
Peter Compa
Tyler Conry
Troy Coon
Taylor Saige Cooper
Finn Soloman Cowan
Dallas Cox
Angelia Crawford
Carly Cribben
Dylan Crisorio-Rivera
Jacob Michael Crowley
Abigail Faith Curtis
Hope Dangerfield
Tristan Dean
Brian Decker
Sara DeHart
Noelle Deneault
Kelly Dickerson Wright
Sydney DiMaria
Bryan Shawn Doan
Jesse James Drugmand
Adrienne Dale Dumas
Amanda Leigh Durbin
Jeffery Ronald Durrigan
Joshua Liam Siddhattha Eck
Cody Edwards
Cole Benton Edwards
Reese Gabrielle Eisele-Elizondo
Shelton Earl Evans
Emma Fahey
Joey Falasca
Henry James Faure
Tysen Rick Fausett
Sean Feaster
Tyler Anthony Finley
McKynna Lorraine Fisher
Benjamin Fleming
Michael Christian Fogelgren
Candis Nakole Forman
Sean Patrick Forney
Dylan Richard Forsythe
Thomas Alexander Frietag
Anna Fuss
Emma Elizabeth Gallagher
Christopher Michael Garner II
Steven Tyler Gartman
Hayley Chantelle Ginns
Matthew Goembel
Nadia Gould
Kirra Graham
Kaleb Matthew Groce
Tyler Grubb
Aimee & Cameron Bellas Haas
Shana Kay Hagood
Joseph Michael Hales
Brandon James Hall
John Michael Hall
Taylor-Lynn Faith Halter
Zarek Ryan Halterman
Colin Raymond Hambel
Coleman Allen Hamilton
Blake Hanlon
Zachary Keith Harris
Sarah Harrison
Sean Allen Heiting
Jacob Nelson Henze
Rebecca Breana Higgins
Molly & Megan Hirst
Jack Hockenyos
Karson Hocker
Rebecca Christine Hodson
Aaron Jacob Hoewing
Tierney Elizabeth Hohman
Brian Holsworth
Hannah Elizabeth Horn
Mattson Edward Houghton
Samantha Marie Hudson
Elizabeth Joy Huffman
Belle Kathleen Hutto
Anthony Urban Iacobucci
Joshua Evan Interiano
Isaac Jackson
Bradley James Makanaokalani Jacobs
Hayley Jarrett
Derek Jarvis
Bethany Michelle Jenkins
Gregory Joseph Jennings
Alexandria Katelyn Job
Matthew Ryan Johnson
Joseph Mackenzie Kelley
Joshua Kelly
Lewis Kelly
Madison Elizabeth Kelsay
Cameron Anthony Kennell
Alyssa Catherine Kessner
Samuel Kincade
Ariana Kjaersgaard
Clara Knapton
William James Kowalski
Sara Hope Lamkin
Jessica Lander
Brittney Landry
Alysha Rhiannon Lane
Charley Langford
Mathias Jacob Lehmann
Cody Michael Ragland Lenhart
Darragh Lennon
Sarah Christina Lewis
Aidan Gustavo Liebe
Jane Elin Lockhart
Joe Longman
Danny Lord
Natalie Lund
Sean Matthew Lutz
Cody Albert John Maerten
Blake Massie
Sydney Olivia Matthews
Jacob Aaron Matulevich
Madeline Adell May
Caleb McAndrew
Joshua Cameron McCarty
Fallon Jessica McClelland
Lily Grace McDonald
Connor Ellis McLuckie
Fletcher David McNeil
Margret Faith McSwain
Blake John Merrick
Abigail Metty
Ashley Meyers
Melissa Michalski
Alexyss Jean-Elizabeth Miller
Megan Renee Miller
Kristin Marie Moats
Oscar Moffet
Preston Carr Montague
Avery Michelle Morgan
Kevin Russell Morgan Jr.
Jodi Marie Morrison
Spencer Andrew Morton
Brandon Motley
Alex Mourtsen
Ryan Matthew Mudderman
Owen Mulak-MacPhee
Michaela Munson
Anugrah Murali
Connor Alexander Myers
Naomi Nagurski
Benjamin Liam Newby
Luke Nowakowski
Ashley Nugent
Clare O'Connor
Jonathan O'Malley
Tyler James Oosterhoff
Emily Frances O'Reilly
Riley Tucker Padgett
Caden Andrew Parker
Jak Parsons
Isaac Conner Pedler
Matthew Ryan Peterson
Jonah Michael Phares
Anna K. Piasecki
Rex Piner
Aiden Plaisted
Dante Polito
Max Robert Porter
Sydney Price
Cole Robert Pulse
Jacob Pulse
Benjamin Michael Pytyck
Jonathan Luke Rademaker
Angela Reedell
Candace Reeves
Rebecca Jade Reid
Dominic Joseph Reitz
Samuel Lee Retterer
Caleb Michael Rhodes
Andrew Christian Riley
Brianna Mary Roberts
Logan James Roberts
Rhian Robilliard
Ian Riley Robinson
Wesley Alexander Robinson-Derrick
Christopher William Rodriguez
Hailey Elizabeth Rogula
Brayden William Ross
Brook Sue Rupe
Abby Elizabeth Russell
Bennett Rezsö Russell
Madeline Jo Rutheford
Juan Heinrick Sampedro
Collins Sarah Violet
Thomas Sawyer
Colton Saylor
Briana Schafer
Harlee James Scherrenberg Timms
Eric Christopher Schmitt
Madison Lillian Schultz
Hope Natasha Scott
Maresa Serra
Parker Daniel Setliff
Luke Stephen Shooter
Harry Simpson
Trent Montgomery Sincavage
Amanda Brianne Slavin
Nicholas Brian Slavin
Cherylynn Renee' Smith
Mathew Smith
Rhiannon Lea Smith
Richard Carl Snow
Laura Beth Snyder
Jaret Paul Spelich
Aaron Spencer
Makenzee Spencer
Casey Richard Starks
Connor Ryan Stevenson
Kaylyn Stiner
Karina Strong
Haley Elizabeth Sum
Emily Ruth Surgis
Alisha Faith Swartz
Cadwell Tanina
Mersayd Margaret Taylor
Jaqueline Taylor-Jackson
Garreth Mervy Thomas
John Lee Thompson
Ryan Treasure Thompson
Stephanie Ann Thompson
Anna Tijan
Jeremy Shane Torrence
Christopher Michael Toth
Jessica Mary Tucker
Ryan Michael VanderSchaaf
Quinn Michael Verdin
Alexander Lee Vise
Bailey Cameron Viset
Lisa Warnock
Zachary Wasik
Cameron Dianne Watson
Callum Weber
Joshua Weber
Brandon Weborg
Shae Ashley Webster
Allison Brooke Weldon
Emma Margaret West
Kara Westover
Sherry Wheeler Wheeler-Macormic
Natalie Dianne Whittle
Samuel Austin Wiggs
Ashton Lee Williams
Nathan Hunter Wilson
Corey Woodring
Max Wyatt
Katie Elizabeth Yerger
Janessa Opal Margaret Young
Avery Mae Ziebert
Aagje, Babette and Suze Zwart

Information and the History of Congenital Diaphragmatic Hernia

History of Congenital Diaphragmatic Hernia

- Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by trauma.

- In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male. Miraculously, this man lived 24 yrs with CDH in the 17th century.

- In 1701, Holt reported the first case of CDH in a child.

- In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.

- In 1827, Cooper described the symptoms, pathology and classification of CDH.

- 1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.

- In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical Observation.

- In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.

- In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.

- In 1902 the first reported successful operation of an infant born with CDH

- In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.

- In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.

- In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.

- In 1989, Michael Harrison led the team at the UCSF in the first succesful open fetal surgery for CDH.

- In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays

- In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia

- In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.

- In 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information and research options.

- In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.

- In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.

- In 1997, the first on-line information site for CDH was created by CHERUBS.

- In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF

- In 2000, the first international conference for families affected by CDH was held in Orlando.

- In 2007, the Association of Congenital Diaphragmatic Hernia Organizations (ACDHO) was formed.

- Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness Ribbon was created by families of children born with CDH to help raise awareness and research of the birth defect.

- In 2007, the first on-line forum specificially for CDH was created

- In 2008, CHERUBS created the first web site dedicated solely to free access of information for research of CDH.

- Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia. Whether it was Congenital is not known.

- CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by The CDH Study Group. The survival rate is still 50%.

- The cause of Congenital Diaphragmatic Hernia is still not known but it has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.

- Is has been suggested in some medical journals, but not proven, that thalidomide, quinine, phenmetrazine and nitrofen may cause CDH. A Vitamin A diet deficiency is known to cause CDH is lab rats.

- 20% of CDH pregnancies also are diagnosed with polyhydramnios, an over abundance of amniotic fluid


In CHERUBS Membership:

- CDH has both occurred and not occurred in identical twins.

- We have many set of fraternal twins with one baby with CDH and the other healthy

- 3 families out of 2500 have had 3 children each with CDH. The reoccurance rate of CDH in siblings, without any other birth defects or genetic anomalies is 2%

- Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 yrs old.

- 3 of our members, all male, have had 6 CDH repairs each.

- CDH has been diagnosed in utero as early as 10 weeks for several of our members.

- Many of our adult survivors have gone on to have healthy babies and pregnancies of their own. Only 2 families have both a parent and a child born with CDH.

- Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.

Our Advisors

I'd like to take a few minutes to introduce our Board. Because I do the blog postings and the office work, people mistake me as the "face behind CHERUBS"..... which is so untrue. I am one of many who make our wonderful organization run. We have the most amazing volunteers and I will be writing about them as well soon, and also adding stories and videos of members too. But for right now, I'd like you all to meet some very special people:

Parent Advisors
(in no particular order)

Judi Toth - mom of cherub with wings, Christopher Michael Toth, Judi has been a member of CHERUBS for 11 years. She was our Secretary for several years until her work and health didn't allow for volunteering as many hours as she was. Judi has spent 1000's of hours volunteering over the years, from helping to create our database to planning events in Washington DC for us, she has been invaluable to CHERUBS. Even through 9/11 when she was in the Pentagon as it was hit, she still called us to let us know she was ok and to check on other members. She often calls CHERUBS her "second baby" and she means it sincerely. When Shane died Judi stepped in and handled all of CHERUBS affairs so that I could have time to grieve my son without worrying about our organization. She also helped plan his funeral and held my hand those days following his death. That is the type of person that Judi is and I know she makes Christopher proud.

Tara Hall - mom of cherub on earth, Brandon Hall, who has taught us all a lot about feeding issues and reherniations. Tara is also our Ohio State Representative and has planned 10 years of Ohio picnics very successfully. Always ready to lend an ear or offer encouragement, Tara has been a shoulder for 100's of CDH families. When my son died Tara immediately hopped into her car and drove from Ohio to North Carolina without any hesitation, no matter that long drive or how emotionally hard it must have been for her. Tara has the highest of integrity and has been a constant source of inspiration and support to me and so many other CDH families.

Stephanie Olivarez - mom of adorable Shelby Olivarez, Stephanie joined CHERUBS just last year but within weeks stepped up to volunteer and she has become such a huge part of all we do at CHERUBS we don't even remember what it was like without her! Stephanie and her husband, Shane, held an ATV Rally in Indiana in honor of Shelby and CHERUBS and did a phenomenal job of raising CDH Awareness. Steph is our Indiana State Representative as well as our Volunteer Coordinator for State and International Reps. She also stepped up to help plan the 2008 CDH Conference and Angel Ball and without her, neither event would've been possible. She does all this, raises 4 beautiful little girls, and still keeps up with all our members offering them prayers and encouragement. Stephanie is family now and stuck with us CHERUBS members forever. :)

Barbara Wagner - mom to Logan Wagner, a teenager now.... wow! Where has the time gone? Barb has been a member for 10 yrs also I think and is such a huge help with CHERUBS I really don't know what I'd do without her! She's our Volunteer Coordinator for Committees and also holds almost every other volunteer position as well. Always cheerful, no matter what she has going on in her own life... Barb gives so much of herself to CHERUBS and CDH families. Calendars, cookbooks, anything creative.... she's our gal! She even gave me ideas for my wedding. Barb is the type of woman who makes a friend and they are like a sister to her.... we are so lucky to have her. She's our newest Advisor and we're glad to have her aboard!

Brenda Slavin - mom to cherubs with wings, Amanda and Nicholas Slavin. Brenda is the 3rd member of CHERUBS, joining us back in 1995. Mom to 2 babies lost to CDH and now a PICU nurse herself, Brenda offers a unique perspective that is so valuable to us. Also a newsletter contributor, Maryland State Representative, and conference speaker, Brenda is superwoman. She honors her babies memories, is single mom to 2 incredible kids on earth, works lots of hours helping the children in her PICU and their families and still has time for CHERUBS. Not to mention she's one heck of an amazing woman and friend. She's gotten me through grief of losing Shane, losing my sister and a divorce and kept me focused on CHERUBS.... she's done more for our organization than she knows and we love her for it.

Corin Nava -mom of cherub with wings, Gabriel Nava, Corin is easily summed up with one word - "sweetheart". Not that she's not a complicated and interesting lady but she has the sweetest personality and biggest heart and I can't imagine anyone meeting her and not immediately adoring her. She is on almost every committee, has several fundraisers throughout the year in New England for CHERUBS; whether it's baking 100's of truffles or bowling, or putting together 100's of information packets in Gabe's memory to donate to the local hospitals. The woman has energy - she does all this and has an infant, a husband, a job and she's State Representative for almost every New England state! Not to mention she's always offering encouragement and support to all the members and even offers baking advice. She's a saint... she may not agree with that statement but I still think it's true.

Darlene Silverman - grandmother to Emily. Darlene is our voice of reason and encouragement when things get rough. She's given me a virtual hug or swift kick when I need it. Her loyalty to CHERUBS and CDH families is amazing. Whether working all hours of the night with me on legal paperwork or research, she is such an amazing woman. She is the only Advisor that I haven't met in person yet and I can't wait to finally hug this woman! If it hadn't been for Darlene's constant support and encouragement, I really don't know how I would've made it through all the drama and attacks on CHERUBS in the past 2 years. No matter how discouraged I got, Darlene was right there reminding why we do what we do every day - for the cherubs and families. If there was information we needed for anything at all - she can find it. Darlene has been my guardian angel on earth and I so appreciate her and all she's done for our organization and my own sanity. :)

Elaine Moats - mom of Kristin Moats... a teenager who just got her driver's license. It still blows my mind to think she's old enough to drive now; she was so little when Elaine joined CHERUBS back in 1996 I think. Elaine... we jokingly call us "old-timers".... she's been a member of CHERUBS for almost as long as I have. Elaine has dedicated 1000's of hours to CHERUBS; all 3 cookbooks, State Representative for 4 midwest states, on almost every committee, writing 100's of letters for auctions... Elaine is just... wonderful. She is one of the calmest, most poised people I have ever met. She always knows what to say, always is quick to volunteer to help, has given so much support and encouragement to so many CDH families throughout the years. Not to mention that she's been such a source of support and encouragement to me throughout the years as well and her friendship means so much to me. I know a lot of other CDH families feel the same way.

Kara Hess - mom of Adam Hess, who is keeping his mom hopping lately and whom we hope feels better soon. Kara.... she's been an Advisor less than a year I think but she's made such an impact. Kara is so funny, so honest and blunt - and we need that! Not that we don't have Advisors who are also funny, honest and blunt... Kara is just a breath of fresh air, a new CDH mom to stir things up with all of us "old-timers". When I'm wrong, she tells me. When we throw out a bad idea, she let's us know. When one of us needs encouragement or some spiritual comfort - she's there, offering words or a laugh or a funny photo or scripture. She is such a good Christian.... one that I look up to and want to be more like. Married with 2 young boys, she has her hands full but still has time for all we have going on at CHERUBS and supporting members as well. Though Kara is a new Advisor and friend, she is a dear one... to so many of us.


Heidi Cadwell - mom to cherub on earth, Tanina Cadwell. Tanina... our walking miracle cherub... ok, all cherubs are walking miracles but Tanina is a walking miracle cherub who goes even farther than just being a "normal" kid - she's an extraordinary teenager achieving goals that would be hard for even adults to do. And a huge reason behind that is her amazing mom, Heidi. Heidi is another "old-timer", having joined us around 1998. Heidi has had more than her share of troubles the past few years but she takes on each challenge with such dignity and grace and determination.... it's so easy to see where Tanina gets all those amazing qualities (not that Frank isn't great too!). And through it all, Heidi has been there for CHERUBS. Sometimes not as much as she wants to be involved in things but we all know she's there, quietly encouraging us, silently praying for us and still wanting to help others. Heidi was a teacher for years, helping children to learn. A foster mom to so many kids, giving them a home and love. And she's held many volunteer positions at CHERUBS throughout the years as well. She has the biggest heart and cares so much for others.... the world would be a much better place if there were more Heidi Cadwell's in it.

Our amazing Advisors.... those behind the scenes with me helping to keep the organization going. Our members have no idea how much time and love they all donate to CDH families. How many hours they lose with their own cherubs and families to make sure that all CDH families have the information and support that they need. All volunteering - no one at CHERUBS is paid a salary. They all give of themselves because our cause is so important to them... and they so honor their cherubs' memorys and lives. I am so grateful to know each one of these wonderful women.

So how do you become an Advisor? Our Advisors were chosen many years ago when we needed them for updating our 501(c)III paperwork. Most of our Advisors have been on the Board since then, with a few additions that have been voted in in the past 2 years to shake up ideas a bit and we've only lost 3 Advisors in 14 years - all due to needing more time with their families and all 3 are welcome back on the committee at any time. All of them are very active in our organization as members and Advisors. They are all quick to help, respond and do what they can for CHERUBS and CDH families. We've been very lucky to have so many dedicated people who volunteer their time and hearts to CHERUBS and to families affected by Congenital Diaphragmatic Hernia.


Professional Advisors

Our Professional Advisors are equally amazing; caring for CDH babies and their families health and their rights. They have all given countless hours of advice, support, encouragement, referals, and been by our side for years - helping us to help CDH families. Without them, CHERUBS would not have come as far as we have. Their support for our organization and CDH families has been overwhelming and so appreciated over the years. They are the true fighters for CDH families and babies.

Lesli A. Taylor, MD
Vice-President
Professor Director, Division of Pediatric Surgery
East Tennessee State University

Rachel L. King, RN
Medical Advisor
Nurse Supervisor; Pediatric Intensive Care Unit
Duke University, Durham, North Carolina
Board Member

Vincent R. Adolph, MD
Medical Advisor
Department of Pediatric Surgery
Ochsner Clinic, New Orleans, Louisiana

Michael R. Harrison, MD
Medical Advisor
Professor of Surgery and Pediatrics
Director, Fetal Treatment Center
University of California, San Francisco

Aviva L. Katz, MD
Medical Advisor
Division of Pediatric Surgery
Alfred I. du Pont Institute, Philadelphia, Pennsylvania

Jacob C. Langer, MD, FRCS(C)
Medical Advisor
Chief, Pediatric General Surgery
Hospital for Sick Children, Toronto, Ontario, Canada

Cynthia M. Powell, M.D.
Medical Advisor
Assistant Professor of Pediatrics
Division of Genetics and Metabolism
University of North Carolina
Chapel Hill, North Carolina

Prem Puri, MS, FACS
Medical Advisor
Consultant Pediatric Surgeon
Children's Research Centre
Our Lady's Hospital for Sick Children
Crumlin, Dublin, Ireland

Jay Mark Wilson, MD
Medical Advisor
Assistant Professor of Surgery, Harvard Medical School
Associate in Surgery; Director, ECMO Program
Boston's Children's Hospital, Massachusetts

Claudine P. Torfs, PhD
Honorary Medical Advisor
Epidemiologist
California Birth Defects Monitoring Program

Betty Mekdeci
Professional Advisor
President & Founder
Birth Defect Research for Children
Celebration, Florida

M. Shane Perry
Attorney at Law
Legal Advisor
Morrisville, North Carolina