How to help receive Government Funding for CDH Research

Visit Your Member of Congress

Meeting on Capitol Hill

Join us in Washington DC on March 30 - April 1, 2015 to speak directly to Senators and Congressmen about Congenital Diaphragmatic Hernia.

We set up the meetings for you and train you on what to say.  It's very easy and by participating, you get to be a part of history.

Click here to register.

 

A Step by Step Guide to Meeting Locally

Meeting with your legislator in his or her office lets you convey your message about Congenital Diaphragmatic Hernia face to face. Follow these steps to schedule an appointment and make the most of your meeting.

Step 1: Schedule an Appointment

Tips to schedule an appointment:

• Call well in advance
• Be prepared to be flexible
• Be patient but persistent
• Follow up
• Say thank you
• Plan to call the Member of Congress’ office well in advance of when you intend to meet with him/her.

Find your member of Congress. After you’ve looked up your member, click on their name to go to their website. Scroll to the bottom of their homepage and find the phone number for the office where you’d like to have your meeting.

Call your Member of Congress' office and ask to speak with the scheduler. To increase your chances of getting a meeting with your representative, try one of these lines:

“I’m a constituent, and I would really like to meet with the representative/senator to discuss how Congenital Diaphragmatic Hernia has affected my life. Is there a date that he/she is available for this meeting?”

“I would really like to meet with the representative/senator while he/she is back from Washington to talk about Congenital Diaphragmatic Hernia. What date would work best for his/her schedule when he/she is back home?”

Follow up! Clarify the best way for the office to contact you about your meeting request. Call the office again to check the status of your meeting request. Keep contacting the office once a week until you are offered a firm meeting time.

Some offices may require that you put your request in writing in order to schedule a meeting. Use this sample meeting request letter if you are asked to provide a written request.

Step 2: Contact Us

Tell us when you schedule your meeting!

We’ll provide you with all the tools, training, and resources you’ll need to make your meeting a success.

Click here to email the CHERUBS Awareness Committee.

Step 3: Print Your Materials

Click here to find and print all of the handouts you’ll need for your meeting.

Step 4: Attend the Meeting 

When you meet with your Member of Congress, your job is simple — to inspire. Tell your Congenital Diaphragmatic Hernia story — and remember, you’re the expert. Here are some tips to help you make the most of your meeting:

What to Share: 

• Your name and that you are working with CHERUBS- The Association of Congenital Diaphragmatic Hernia Research Awareness and Support
• Your connection to Congenital Diaphragmatic Hernia
• The challenges of the birth defect, with the focus on solutions
• Where you are from and that you are a constituent

How to Say It:

• Be prepared — plan what you want to say
• Keep it brief
• Show up early and prepare to be flexible
• Dress professionally
• Leave handouts

Better to Leave Out:

• Acronyms (like “CDH”, instead use “Congenital Diaphragmatic Hernia”)
• A mention of who you voted for

And don’t forget to let us know how it went!

Click here to email the CHERUBS Awareness Committee.

Step 5: Send a Thank You Letter

If your Member of Congress has taken the time to support Congenital Diaphragmatic Hernia, by meeting with you or sponsoring legislation which is VERY important, it is vital to say thank you.

Here’s a sample thank you letter.

Upcoming Congenital Diaphragmatic Hernia Events

$30,000 CDH Research Fund Drive

Learn how easy it is for you and your family to fundraise in honor or memory of your cherub by selling raffle tickets and/or creating a Firstgiving page.   Read more...  
Read more »
Upcoming Events:

Now:

• 2013 Firstgiving Fund Drive for CDH Research
• 2013 Combined Federal Campaign - CHERUBS CFC #31232
• "A Fighter's Lullaby" - A CHERUBS Fundraiser
• CHERUBS Jewelry Fundraiser
• until October 26 - Unmask CDH
• until October 26 - 2013 Congenital Diaphragmatic Hernia Research Raffle

September:

• 14th - Arizona CHERUBS Picnic
• 21st - Utah CHERUBS Picnic
• 21st - Oregon CHERUBS Picnic
• 28th - Indiana CHERUBS Picnic
• 28th - California CHERUBS Picnic

October:

• 1st - Wake Forest Quarter Frenzy (NC)
• 5th - CDH Awareness Bowl
• 12th - Texas CHERUBS Picnic
• 12th - Kylee's 13th Birthday Fundraiser (Baltimore)
• 26th - Masquerading Angels Ball
• 26th - 50/50 Raffle Drawing
• 31st - Trick-or-Treat for CHERUBS

November:

• 10th - Books & Calendars Submission Deadline
• 15th - On-line Candles for National Children's Memorial Day

December:

• 1-30th - 2013 CHERUBS CDH Research Grant Contest
• 8th - 2013 National Children's Memorial Day
• 31st - CDH Research Grant Contest Winner Announced

2014:

• April 19th - Day of Congenital Diaphragmatic Hernia Awareness
• April 19th - Day of Congenital Diaphragmatic Hernia Awareness Parades
• June 24th - 2014 Congenital Diaphragmatic Hernia Conference (Washington DC)
• August 11th - CHERUBS 2014 European CDH Conference

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

MEET OUR VOLUNTEERS - Shana Kelly

Shana Kelly Shana is mom to Landon Matthew, born June 20, 2008 with an undiagnosed left-sided Diaphragmatic Eventration. Landon had his repair surgery on day three of his life and was blessed to go home after only three weeks at Toronto's Hospital for Sick Children. He suffered from severe reflux and was listed as failing to thrive during his first few months. At four months of age he was admitted to hospital with suspected pneumonia. In fact, it was a right-sided Diaphragmatic Eventration that had allowed his liver to push into his right lung; the lung that was doing the majority of the work for his body as his left lung was underdeveloped. He underwent a second surgery a few days later. After a rough recovery he came home just in time to celebrate his first Christmas and hasn't looked back. Shana resides in Bobcaygeon, Ontario with her husband, Matt, Landon and his older sisters Skye and Nyah. She is a member of the Professional Golfers' Association of Canada, an amateur photographer and a graphics geek.

MEET OUR VOLUNTEERS - Elizabeth Lopez

Elizabeth Lopez Elizabeth (“Lizz”) was born the youngest of 3 on December 28, 1972 in Burlington, NC. It was immediately obvious that there was something not “right,” since she was dark blue. Four hours later, after being rushed to Chapel Hill, NC to what was then UNC’s Memorial Hospital, under the care of a talented young surgeon who had luckily paid attention in his Pediatric Surgery rotation as a resident, surgery was done to repair the hole in her diaphragm and put all vital organs in their proper places, followed by a 6-week stay in the hospital. Luckily, there were no other complications and Lizz has lived a full and somewhat productive life. Lizz and her husband Juan are the very proud parents of 3 daughters, all born perfectly healthy.  As an adult survivor who has never known anyone else with CDH until finding CHERUBS, she looks forward to bringing hope to parents of survivors and to grieving parents alike.

MEET OUR VOLUNTEERS - Ashley McCafferty

Ashley McCafferty Ashley, mom to 2 wonderful boys Brycen and Logan. My youngest, Logan was diagnosed at 20 weeks gestation with left-sided CDH and was born 10-14-11 at St. Luke’s Hospital in the Texas Medical Center here in Houston. Immediately after birth, Logan was transferred to the Level 3 NICU at Texas Children’s Hospital. While in the NICU Logan was a fighter and amazed everyone on how well he was doing. After 3 weeks in the NICU we were able to bring our sweet baby home without any additional medical problems, machines, or medications! Since coming home Logan has had one other surgery due to a bowel obstruction caused by scar tissue. Logan is a completely happy and healthy little boy that has brought so much joy to our family. I found CHERUBS shortly after my 20 week ultrasound when I first started researching CDH. I am truly grateful for CHERUBS and all the information and support they have provided my family. I am currently a Hospital Angel for Texas Children’s Hospital in Houston.

MEET OUR VOLUNTEERS - Karen Myers

Karen Myers Hello, my name is Karen Myers, and I am the mother to Kaleigh Marie who was born on 30 July 2002. She was born at Wilford Hall Medical Center, in San Antonio TX, after learning at 20 weeks gestation she would be born with a left sided Congenital Diaphragmatic Hernia. She spent 10 days on ECMO and had her CDH repair on her 15th day of life. Unfortunately she passed away when she was 17 days old. I am also the mother to another angel, William Logan, who was stillborn on 26 May 2005, at 27 weeks gestation, due to non-immune hydrops fetalis. After much testing and genetics couseling it was deemed that there was no connection between the CDH and Hydrops. I have 3 other beautiful children. Alec, who is 20 and off at college. Aubrey, who is 9 and going into the 4th grade and Jackson, who will be 4 and starting Pre-K soon. I also have a wonderful husband, Will, who is active duty Army and I am a stay at home mom. We currently reside in Crestview Florida but move when the Military says so. I have been a member of CHERUBS since finding out about Kaleighs CDH and wouldn't be the somewhat sane person I am today with out all of the volunteers love and support over the years as well as all the wonderful parents I have met along the way who journey through this horrible defect together.

MEET OUR VOLUNTEERS - Aubrey Paulsen

Aubrey Paulsen My name is Aubrey Paulsen and I live in Nebraska with my husband Mike and our two sons; Owen, 3 ½ and Christian who will celebrate his 1st birthday in July. At 20 weeks pregnant with Christian we were sent to a high risk doctor for an ultrasound to look for a cleft palate. Owen was born with Pierre Robin Sequence, which is characterized by a small chin and cleft palate. Our baby did not have a cleft palate but was rather diagnosed with a cyst on his lung. Several weeks and ultrasounds later the diagnosed changed to that of CDH and so the journey of our lives began. Christian was born July 18, 2011 at 38 weeks with a very large left sided defect. He was placed on ECMO on day 2 where he remained for 15 days. On September 30, 2011 after 12 weeks in the NICU at The Nebraska Medical Center we brought Christian home. We struggle with weight gain, battle reflux and have some issues due to his anatomy but he has made great improvements with feeding and I predict he will continue to do so. I am new to CHERUBS but am excited to grow into the role of Nebraska State Representative. I believe that for me the only way to make peace with this experience is to support families, raise awareness and advocate for research.

MEET OUR VOLUNTEERS - Darlene Silverman

Darlene Silverman Darlene has been a member of CHERUBS since 1999 and a Board Member and Secretary for the past few years.   She has an A.A. Degree from Montgomery College in Maryland.  She has worked as a Legal Assistant/Secretary since 1974 at numerous law firms whose primary practice was litigation and medical malpractice defense.  She has raised 5 children and has 8 grandchildren (first grandchild born in 1998 with LCDH).

MEET OUR VOLUNTEERS - Molly Echelbarger

Molly Echelbarger Molly is the mom of Joshua Angel (3/30/10 - 3/31/10).  Joshua was born with left-sided CDH. He was diagnosed at 20 weeks gestation. His stomach, intestines, and liver were in his chest. His intestines pushed his heart to the right side. He had heart problems, hydrop fetalis/polyhydromnious (fluid retention in the abdomen) as a result of heart failure, and was born premature.  At birth, he had two cardiac arrests and developed a collapsed lung, or pneumothorax.  Joshua lived for 12 hours. Molly is the California State Representative. She has been married for 9 years. She has two children; Gabriel 7 years old, and Bethany 3 years old.  She studied Social Services and Sociology.  She is currently a stay-at- home mom, and plans to go back to school. She enjoys helping those in need, singing, photography, and doing volunteer work in her community. Molly is a navy wife and stay-at-home mom.

MEET OUR VOLUNTEERS - Tracy Meyer

Tracy Meyer

Tracy Meyer is the proud mother of Lillian Sophia, born on June 7, 2011 at North Shore Long Island Jewish Hospital (Stephen & Alexandra Cohen's Children's Medical Center).  Tracy found out that Lily was diagnosed with left-sided CDH during her 36-week sonogram.  With the love and support that was given to the Meyer family, Lily proved the world that she is a fighter and there is hope. After a successful surgery 3 days after she was born (which was performed laparoscopically), Lily was in the hospital for almost 2 weeks and came home on Father's Day. Known as the “miracle angel,” Lily still amazes everyone to this day how strong of a fighter she is.

Tracy resides on Long Island, New York with her husband, Christopher. She has been a CHERUBS volunteer for New York since June 2012. Tracy has a BS in Accounting and AS in Computer Science and has been working in the accounting field since 2003 working in audit and tax. Whether it’s at the eastern end of Long Island at the wineries or having a get together at home, Tracy loves spending time with friends and family.

MEET OUR VOLUNTEERS - Elaine Moats

Elaine Moats Hello, my name is Elaine. I am a mom to two wonderful girls and wife to Brett. My oldest daughter was born with CDH. She was born in 1992. We did not know about the CDH until she was born thankfully because we would of been told to abort her. They did not expect her to live. That was how it was back then and because of where we were from and the doctors lack of experience with CDH, etc. She had her hernia repaired at one day old, her nissen done at 3 months old, her hole in her heart closed at 1 year old, she was oxygen dependant till age 2 1/2, she was g-tube dependant till age 4 1/2, and she had many developmental delays. She had clear sailing until her bowel obstruction at age 14. She amazes me how far she has come and how much she has had to endure. Kristin graduated High School in 2011 with honors, a member of the National Honor Society and ranked #19 in her class of over 200. Kristin was also on the varsity tennis team, on the varsity cheerleading team, in the top girls choir, and made it to State 2 years singing a solo. Outside of school Kristin loves her dance and clogging classes. All of this with only one functioning lung :) As I write this (2012) Kristin has finished her first year in college and I am happy to say she has excelled in college just like high school. My youngest daughter, Brittany, is just as amazing. I smile when I tell them they both like to make GRAND entrances. Kristin, with her CDH being a surprise and Brittany, with being born 2 months early while we were on vacation in a town of 200. Oh and by the way she was breech and I delivered her naturally in a rest home :) So my claim to fame is having 2 amazing girlies :) I have been lucky enough to be a stay at home mom up until 2 years ago. At that time I joined the work force and became an aide in Special Ed in our local K-3rd grade school. Oh what fun I have had helping these kids. In my spare time I like to read, crochet and watch my family in whatever sports event they are in. CHERUBS has been part of our lives since 1993. I don’t know where I would have been emotionally without CHERUBS. It has been my lifeline for CDH. You have to realize in 1992 there was not all the technology available to connect us all. We have met many wonderful parents here.

MEET OUR VOLUNTEERS - Karol Napers

Karol Napers Karol Napers is the Indiana Representative for CHERUBS and mother of three beautiful blessings, Lexie, Jake and little Cherub Tate.  Tate was born in September of 2011.  His left sided CDH was discovered (through the hand of God) the day before his birth at 40 weeks.  Tate was born at St. Vincent Women's Hospital in Indianapolis, IN which has an amazing CDH team and fabulous NICU staff.  Tate's repair was done on day 6 (her birthday) at Peyton Manning Children's Hospital.  In surgery they discovered his CDH to be more severe than originally thought, as his spleen and intestines were both herniated so his diaphragm is now sporting a Gore-Tex patch.  Tate had Pulmonary Hypertension, an infection and partially collapsed right lung following surgery, Anemia, Acid Reflux and currently ASD.  His ventilator was removed on day 13 and he got to go home just a few days short of one month old!!!   Tate is doing very well and loves playing with big Bro and Sis! Karol is married to Dan Napers, an incredible father and marathon runner who supports CHERUBS through Crowdrise.  Karol has worked as a laboratory assistant since 1999, now working part-time and is a full-time mom, which is her passion.  She loves being outside in nature, trail running, gardening, camping, and inside, cooking and anything that has to do with art, crafts, sewing and home projects.

MEET OUR VOLUNTEERS - Megan Weedon

Megan Weedon My name is Megan Weedon.   I live in Paw Paw, MI with my Husband (Alyssa’s Step dad) and our two sons, Benson (2.5 yrs.) and Caleb (7 months).  My daughter Alyssa was born 7/19/04 with a LCDH.  The hernia was spotted at our 24 weeks ultrasound but officially diagnosed at a 28 week ultrasound.  Alyssa spent 9 weeks in the NICU at Helen DeVos Children’s Hospital in Grand Rapids.  She was put on Veno Venus ECMO 12 hours after Birth and was on ECMO for 5 days.  She was then weaned and taken off and her hernia was repaired.  4 days post op. she was in Respiratory distress and put back on Veno Arterial ECMO.  She spent another 6 days on the machines.  To my knowledge, Alyssa is the only double case at HDCH to date (checked stats December 2012).  Today she is a happy, healthy 8 year old, although we are still battling weight gain issues.  She had a Fundoplication (Nissen and Mic-Key G-tube) placed at 7 months old and we still use her tube today for 3 bolus feeds a day along with working on her oral eating quantities.

MEET OUR VOLUNTEERS - Lisa Thibeau

Lisa Thibeau Lisa is mom to Adam Alexander. Adam was born 8/14/2002 with undiagnosed Right sided CDH. He was born in Hammond, Louisiana and transferred by Life-Flight 4 hours later to Ochsner Hospital. He was stable enough for his repair on day 3 and was on ECMO on day 4. He spent 10 days on ECMO, 23 days on a respirator, and 44 days on Oxygen. He had a fundoplication and a g-tube placed (removed at 13 months), and 2 inguinal hernia repairs before coming home on October 17, 2002. Today he is almost 10 years old, he has interstitial lung disease and asthma. His last surgery was January 2010 to repair a patent ductus arterosis. He loves lego, computers, play station and swimming, he is entering the 5th grade this year! Lisa is also the State Representative for CHERUBS in Louisiana. She is married to Dana Thibeau, they also have two amazing daughters Skylar (14) and Katelyn (6), is a stay at home mom, and all of the children are home schooled. She is active in her local home school group, and Bible Drills.

MEET OUR VOLUNTEERS - Paula Endres-Roepcke

Paula Endres-Roepcke I am a newlywed mother of four healthy children and one born with LCDH.  At 20 weeks of pregnancy my son, Jacqsuen was diagnosed.  I was told his intestines and liver were in his chest and his heart had been pushed to the right side of chest.  At 20 weeks my son was given 50% chance to survive.  At 35 weeks I was informed his stomach was in his chest and his survival rate was decreased to less than 10%.  Jacqsuen was born on February 15, 2008 and was placed on ECMO at 2 days old.  He spent 28 days on ECMO and then had repair surgery and Gore –Tex patch placement.  At 6 weeks he had g tube placement surgery and stayed in the NICU until 3 months old.  He came home with oxygen, monitors and a mic key button.   He has been diagnosed with severe acid reflux, constipation, chronic asthma, chronic bronchitis, pulmonary hypertension and bronchial dysplasia.  The past four years he has had illnesses requiring hospital stays but no other surgeries.   He had his Mic-Key button removed at 4 years old and is still learning to eat and takes most of his nutrients by bottle.  Although Jacqsuen spends most of his time indoors he doesn’t complain.   The biggest challenge right now is keeping weight on him.  I am an unemployed paralegal but I have an online bakery.  My bakery is called A Different Kind of Bakery because I make sugar free and lactose free goodies.  I have two children lactose intolerant and Jacqsuen is not allowed a diet high in sugar or cholesterol.  I am new to CHERUBS but I look forward to being the state rep for Iowa and getting to know the families in my state.  I hope to be able to help and support them as much as I have from everyone at CHERUBS.

MEET OUR VOLUNTEERS - Michelle Rogers

Michelle Rogers

Shelly is the mom of Jaxon Thomas Rogers, born July 17, 2009 at 38weeks 4 days with a left-sided CDH. He spent 20 days in the NICU at Riley Hospital for Children in Indianapolis, Indiana. He had surgery to repair his hernia when he was 4 days old, his stomach, small and large intestines and his spleen were upand they were able to do the repair without using a Gortex patch. During his surgery his surgeon discovered that his organs that were up were inside, as he put it a bubble, and we were told is rare and possibly was the reason for the minimal damage to his left lung. Jaxon was on an oscillating ventilator for 6 days, a regular ventilator for 5 days and cannula oxygen for another 9 days. He was released to go home with no medicine, no feeding tubes and no oxygen. He did develop reflux and was on medicine for that until he was ten months old. He is now a very happy 3 year old little boy. He loves his sisters and to play with his trucks!

Shelly is the Indiana State Rep. for Cherubs. She is married to her wonderful husband Greg, and they have 3 beautiful little girls as well as Jaxon...Emily, Lillie and Abbie. She lives in the small town a little northwest of Indianapolis that she was raised in and her children attend the same school she did as a child. Family is the most important part of her life. Shelly is a stay at home mom to all four of her children and is thankful she is able to do so. She recently decided to go back to college to pursue a degree in nursing, Jaxon's CDH and stay in the NICU are a big part of that decision.. She loves meeting and talking to CDH families to share stories and support. She also loves to read, take pictures, to help with her kid's activities, and really enjoys singing and dancing(though admittedly not well!) with her kids as also.

MEET OUR VOLUNTEERS - Kara Hess

Kara Hess Kara is mom to Adam, LCDH survivor born August 2006.  Other complications from his CDH include Gastric Volvulus (rare abnormal rotation of the stomach of more than 180° that creates a closed loop obstruction), Dysphagia, Hypospadius, reherniation, bowel obstruction, and malrotation of the intestinal tract.  Adam also has Apraxia, a neurological disorder that is characterized by the loss of ability to carry out learned movements,despite having the desire and physical ability to perform the movements.   Kara has been a member of CHERUBS since 2007 and has served on the CHERUBS Executive Board of Directors and Conference Planning Committee.  She is wife to Chuck and is a stay at home mother of two busy boys. Prior to motherhood, Kara worked as a Senior Contracts Specialist for a meeting and conference planning company.  She also worked as a Professional Development Assistant for a child care referral agency. Kara received her Associate of Applied Business degree from Stark State College. She enjoys Thai and Indian dining/cooking, biking, traveling, garage saling, daily coffee time with her mom, and leading a daily women's Bible devotional group.

MEET OUR VOLUNTEERS - deAnn Strother McGilberry

deAnn Strother McGilberry My name is deAnn, 2 of my 3 children were born with CDH. Claude lived 10 days and was diagnosied before birth at 20 weeks. Celie is 6 now and was born undiagnoised. ( Even with high risk ultra sound at 7 months ) She spent a month in NICU, surgery at 3 days. What a fighter , other than her scar you would never no she had such a ruff start. I also have a 10 yr old son Chambers. I have been married to my husband, Darren for 12 yrs. We are actively participating in CDH studies, we never want our children to go through what we have. Having been on both sides of CDH I hope I can be there for other parents who are going through what we did.

MEET OUR VOLUNTEERS - Teresa Meherg

Teresa Meherg

Teresa Meherg, of Fayette, Alabama, is the paternal grandmother of Hunter Easton Mcdonald, born April 13, 2012 with left-sided hernia. After successful surgery Hunter progressed toward recovery until late October when he developed a pocket around his hernia site and developed Pneumonia.

 On October 30, Hunter earned his wings and is now zooming through the heavens with his Cherub friends.

Teresa is also grandmother (Nana) to Spencer age 12, Sara Beth age 6, and Sydney age 4, who all enjoy the long-standing motto at her house: "I can at Nana's".