Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Thursday, December 31, 2009

Children's Surgical Sciences Institute at Saint Louis Childrens


Saint Louis Children's Dr. Brad Warner is the physician leader of CSSI which has assembled surgeons to evaluate surgical techniques, research and share expertise in order to improve the surgeries performed to help children.

This information was reported in the Saint Louis Children's Newsletter "Gifts" Fall 2009. Dr. Warner has also successfully recruited a fetal surgeon which will not only help in congenital diaphragmatic hernia infants but many others too. He is continuing this effort to find committed pediatric surgeons for CSSI.

Currently there is nothing like CSSI anywhere in the United States. Initially CSSI is focusing on four speciality areas:

  • Fetal repair - many conditions can now be treated through fetal surgery, Dr. Warner recently recruited a pediatric surgeon to enhance the team's capabilities in fetal procedures and research congenital birth defects.
  • Childhood cancer - many cancer treatments require surgery but many childhood cancers can not be cured. Research will assist in developing new surgical treatment options. Dr. Warner is searching for a cancer surgeon researcher to lead in this area for CSSI.
  • Trauma - the program is quickly developing in staff to investigate treatments for childhood trauma, improve survival and aid in the prevention of traumatic incidents in the future.
  • Pediatric gastroenterology - this is Dr. Warner's special interest and he continues his research through CSSI. Current research are in Necrotizing enterocolitis and short bowl syndrome. Congenital conditions such as diaphragmatic hernias are also the focus. The surgeons not only diagnose and treat CDH but have carried out new surgical methods to improve outcomes.
On March 31, 2009, a group of determined families, in memory of their amazing children and in honor of their equally amazing children went to Saint Louis Children's Hospital. They presented a check which represented donations received in memory of Cadan Christopher, Ryann Hope and Evan directed to SLCH in an effort to assist research that would benefit congenital diaphragmatic hernia.

These families, children, health professionals and their children were there (some in spirit) to help assist to start this amazing endeavor. Breath of Hope is humbled by what a small group of very determined people can do with hard work, effort and the undying fire within to make a difference. This will make a difference, now and in the future!

Happy New Year 2010



We wanted to wish all a happy and safe New Years 2010.

We know this year has been filled with the diagnoses of CDH babies. Some yet to be born, some born and fighting like the little warriors they are and some who found that wings would be more fun than feet. We are blessed to have known them all.

Keep them all in your hearts, thoughts and prayers as we embark on a New Year to bring more awareness to this birth defect, more advances in Medical Research and support for families.

Monday, December 28, 2009

Whole Foods Market - Nickles for Nonprofits

This January 2010, Breath of Hope will be one of the charities (of two) who will benefit from the Charlottesville, Virginia's location Nickles for Nonprofits.

Whole Foods in Charlottesville has launched a new program to assist local non-profits. When you bring back your reusable bags, you receive a nickle back. You have the option to take that nickel off your bill or better yet receive a wooden nickel and give it to a non-profit. There is a box located in the front of our store to hold these wooden nickels and they are real add up! Please be a supporter of our local non-profits groups. It's an easy way to help agencies that help our community.

Whole Foods Market carries Natural and Organic products and does wonderful things in each community they serve. We thank them for this opportunity!

Sunday, December 27, 2009

2010-2011 Breath of Hope Scholarships

BREATH OF HOPE – SCHOLARSHIP INFORMATION


Breath of Hope, Inc. is offering five scholarships for a one time payment to institution of higher learning for tuition and books for scholarship winners. These scholarship awards were made possible though Breath of Hope’s Congenital Diaphragmatic Hernia Awareness® Day Campaign and a grant from GMAC Financial.

1. Miracle Scholarship – for a survivor of the congenital diaphragmatic hernia birth defect.

2. Hope Scholarship – for any family member of a child who had a congenital diaphragmatic hernia birth defect.

3. Faith Scholarship – for anyone who is going into or furthering their education in Nursing

4. Beyond Measure Scholarship – for anyone who will be furthering their education to become a Medical Doctor.

5. Wisdom Scholarship – for those furthering their education in PhDs, or any graduate degree which would further the research, care and awareness of congenital diaphragmatic hernia.

Each scholarship is a one time payment of $1,000 and will be sent to the institution of higher learning the recipient will or is attending. As with any scholarships, we request all funds are for the tuition and/or books for the recipient’s education and if the recipient is unable to use the funds that they are returned to Breath of Hope so that the funds can be reinvested to continue to benefit future scholarships.


Scholarship Applications are being accepted now and will be reviewed in May 2010 to be awarded by August 31, 2010 for the 2010-2011 academic school year. Complete packets must be received by Breath of Hope by April 30, 2010 in order to be reviewed and awarded on this timeline.


Please feel free to email us at boh@breathofhopeinc.com for the application and further instructions. To see the list of recipients for the 2009-2010 awards please click here.


Thursday, December 24, 2009

Merry Christmas from Breath of Hope

There's more, much more, to Christmas than candlelight and cheer; It's the spirit of sweet friendship That brightens all year. It's thoughtfulness and kindness, It's hope reborn again, For peace, for understanding, And for goodwill to men!


Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.

- Norman Vincent Peale


Remember, if Christmas isn't found in your heart, you won't find it under the tree.

- Charlotte Carpenter


What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace. - Agnes M. Pharo

Merry Christmas!

Tuesday, December 22, 2009

Let Congenital Diaphragmatic Hernia Awareness Take Flight

We will customize this graphic for other organizations, individuals - in memory or in honor of their child. Contact us at boh@breathofhopeinc.com

We will also design a t-shirt with this graphic - 100% of all proceeds raised will go to Medical Research at a Medical Center to help benefit the research on congenital diaphragmatic hernia. Thus far, 2009 Financial Reports have over 50% of all donations raised for Breath of Hope, Inc. have been redirected to Medical Research.

Happy Holidays, Merry Christmas and Peace on Earth...

Tuesday, December 15, 2009

A Statement in Response to Questions We've Been Asked

The Board of Directors of Breath of Hope has been silent regarding the pending trademark case filed against us by one other organization. Our first and foremost concerns are helping families dealing with the prognosis of CDH. As many of us know, the burden of dealing with CDH is far more pressing. Families have children in the NICU, children who are facing additional surgeries, their own grief, the economy and various other things that are much more important.

In response to questions we have received by members, Breath of Hope was not invited to a meeting. This is an attempted settlement which is pending and no date or time has been confirmed. The facts are this meeting was brought forward by both attorneys for the plaintiff and our attorney; we are the defendants in this matter. Under no circumstance is anyone at Breath of Hope attempting to “influence” testimony or the general public. The lack of statement on our behalf in regards to this issue until now is evidence of that. – Breath of Hope’s Board of Directors
Breath of Hope, Inc. © 2010

Monday, December 14, 2009

Putting Our Donations to Action

Over 50% of all Donations to Breath of Hope for 2009 have been directed to Medical Research which will benefit congenital diaphragmatic hernia.

This is from tentative financial reports which will be finalized after December 31, 2009. (All donations received postmarked 12/31/2009 will be counted as 2009 Donations.)

Sunday, December 6, 2009

Breath of Hope promotes International Children's Memorial Day

At 7 PM on Sunday, December 13th, light a candle - at 8 PM extinguish it - so the children who became angels too soon will see the light travel around the world.

This event was originally started and promoted by Compassionate Friends - we thank them for this amazing event.

The overall survival rate of congenital diaphragmatic hernia, even with all the medical advances is still 50% - the others choose wings over feet.

Monday, November 30, 2009

CDH Awareness Day - A Grassroots Effort

When Breath of Hope started the Congenital Diaphragmatic Hernia Awareness Day® Campaign in July 2007, our Board of Directors each wrote a letter and supplied a sample proclamation to their respective state Governors. There is room in the letters for those affected by congenital diaphragmatic hernia to share their stories. We didn’t know if it was going to work. my letter was sent to Governor Tim Kaine. We started to get Proclamations in from other states in the United States . Those of us who had sent in letters and not received proclamations wondered why our states were not responding. Several of us called our Governors' offices and we were told they don’t issue them until a few months prior to the day of the request and was assured that it would be honored.

Later, I was called in February 2008 and told that congenital diaphragmatic hernia covered several other birth defects and they were thinking of doing a Proclamation in Virginia to cover all Birth Defects. (That includes birth marks, correct?) - I felt defeated. I also felt elated because we had 31 states issue Proclamations and Resolutions for March 31, 2008 to be Congenital Diaphragmatic Hernia Awareness Day.

The empowerment that it gives people that a simple request can make a day to honor these families, memorialize the angels lost to this devastating birth defect and also educate the general public to this very common birth defect that is rarely heard of. There is nothing rare with CDH – it affects just as many families as spina bifida, cystic fibrosis, congenital muscular dystrophy and other birth defects which have long received more attention.

Every day 5 families are diagnosed in the US alone. Truly this is a low estimate based upon figures out there because how many are not counted because their families chose to birth early, they were stillborn or they didn’t make it to surgery? Many states do not take accurate data on disease and birth defects. (We are seeing that with reported H1N1 cases in the US now.) This is something that also needs to change and is part of the platform of raising awareness for congenital diaphragmatic hernia.

In early 2009, while checking the Commonwealth of Virginia ’s website and reviewing the Resolutions for 2008, among them was “Congenital Heart Defects Awareness Day”. Now, it is wonderful to have a day because heart defects also need awareness too! Children who are born or diagnosed with CDH sometimes also CHD but congenital heart defects encompass several different birth defects of the heart too. It was then I contacted the Governor’s Office again and also sent in another letter and sample proclamation. I was referred to the Commonwealth of Virginia ’s Bureau of Vital Statistics. I heard back from two amazing women one who asked me “What do you think causes congenital diaphragmatic hernia?” I was taken aback from that question but she explained she likes to hear what parents think. (I liked that too!) These ladies referred me to the Executive Assistant to our Secretary of Health for Virginia . He called me back and told me to send him an email with the information and I did.

After Awareness Day – March 31, 2009 passed – I figured I would fight again for 2010 in Virginia. I then received the Resolution, signed by Governor Tim Kaine. I had long made a promise that this Proclamation would be framed and given to the University of Virginia Medical Center NICU . They deserved this acknowledgement for one of the many birth defects they are on the front lines battling every day. Apparently the University of Virginia also thought this was a good thing since it was featured here in their LINK Newsletter.

I imagine I felt as many did when they received this simple piece of paper, empowered that I had actually done something to make a difference and here was proof. It didn’t have my name on it, or my child’s name either – but it carried with it all the names of all the families who have been affected by CDH and those who help them.

One thing about the families of congenital diaphragmatic hernia – we all are tenacious and determined in our causes and fights. By directing that energy to something that does make a difference – and will make more aware of this birth defect – that gives us hope. Hope that one day the survival rates through research will increase, hope that the children surviving CDH will have more access to medical and therapeutic care that will assist them in having less residuals and an even higher quality of life. These families need that. We as a society need this because the better care, the more we know the less suffering.

Well, what does a day do? Sure, there are Proclamations and Resolutions issued by states and our congress we often wonder why but it does make us more aware and the politicians who vote for medical funding to be diverted to studies to know about congenital diaphragmatic hernia. Would you vote to have funds directed to a birth defect for research if you had no idea what it was? Some would but many would like to know more about what they are voting for and what sort of impact it could make to society and medicine. We know these doctors, nurses and therapists who work on the front lines, shoulder to shoulder with the parents are equally as frustrated and devastated with this birth defect.

An Awareness Day brings notice to these politicians. Senator Clinton was handed a brochure from Breath of Hope during her campaign, and she was impressed that a Proclamation was issued in Iowa . (Thanks to Terri, Ava’s Mommy, who wrote her governor and also handed that brochure to then Senator Clinton).This is a truly grassroots effort of parents, friends, family and medical professionals pushing forward to making a difference. If you would like to join us in this fight to make a difference, please contact us at cdhawareness@ breathofhopeinc. com and we will be thrilled to send you the information to send on to your Governor or Mayor. If you wonder what you can do on this day to bring attention, honor these families please contact us – it can be something as simple as a candle ceremony in your home or church or as big as a press conference that generated thousands of dollars to Medical Research to benefit congenital diaphragmatic hernia which was picked up by the Associated Press – or something in between.

Thursday, November 26, 2009

Even Turkeys Need a Breath of Hope...

Happy Thanksgiving!

Nothing purchased can come close to the renewed sense of gratitude for having family and friends. - Cortland Milloy

Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving. - W.T. Perkister

True thanksgiving means that we need to thank God for what He has done for us, and not to tell Him what we have done for Him. - George R. Henrick

Tuesday, November 24, 2009

Quote...

There is no delight in owning anything unshared. --Seneca

Monday, November 23, 2009

Fetal Surgery - Ireland

This is an article about a pediatric surgeon who is very experienced in fetal surgery - congenital diaphragmatic hernia's trachual occlusion surgery was specifically mentioned - who will relocate from Belgium to Ireland for their Fetal Care Facility.

http://www.imt.ie/news/2009/11/fetal_surgery_appointment.html

Please note - about 8 years ago - Ireland did not even have ECMO. Many families had to travel outside of the country to have their children who were diagnosed with CDH treated.

CDH Awareness Fundraiser

Families are always so affected by the birth of a CDH baby. Not just the immediate family. Sometimes it takes something as devastating as congenital diaphragmatic hernia to bring a family together, make others realize what is truly important.

It may be the parents who daily have to make the tough decisions but it is those who were raised with us, who we are raising who see the profound change and heart ache and feel sometimes utterly helpless to what the parents are going through and what their child is going through too.

One of our families has had an angel join the others recently and this little angel's Aunt felt she had to do something, help raise awareness of this rarely heard of birth defect which occurs just as often as many more commonly heard of birth defects.

Shannon has put together this fundraiser - so if you are in this area - please consider attending. It would be a great way to end your Black Friday Shopping Day in the area!

CDH Awareness Fundraiser

November 27, 2009 3-9pm
At Pizza Barn in Gardnerville, NV
Please join us in this event
To Raise Awareness of CDH
In the Memory Of
Michael Joseph Skaggs

RAFFLE PRIZES
www.breathofhopeinc.com
Donations can be made at
Wells Fargo Acct.#5053066451

Click here for more details.

There will also be a walk in March 2010!

Monday, November 16, 2009

Ethan Miller Designs - Cards that Give Back


Order your Holiday Cards, Birth Announcements, Invitations at Ethan Miller Designs - and they will donate 10% to Breath of Hope - just choose Breath of Hope as the charity! Beautiful designs, quality work and they donate 10% to charity!

Saturday, November 14, 2009

The Great Green Auction - Benefits Birth Defects Research for Children, Inc.

A great way to shop for the holidays and also support a wonderful organization! These products offered in this auction are "green" - what a benefit for those who are becoming more aware of our environment and our exposures!

Please consider getting a gift for you or someone else this year from this wonderful organization!

Click here to go to The Great Green Auction

Friday, October 30, 2009

Goodsearch for Research - Breath of Hope Toolbar

Did you know if you Goodsearch or Goodshop for your favorite charity they will receive about one cent for each search and a percent donated of the sale from the retailer you purchase from? And it costs you nothing! That is right - absolutely nothing. All you have to do is search or shop through GoodSearch/GoodShop.

And if you go here - to make it easier for you - you can download a Toolbar to do this for Breath of Hope! Last year we started a campaign where the proceeds raised from GoodSearch would go to CDH Research. GoodSearch for CDH Research - and we have given the proceeds to research that will benefit medical research of congenital diaphragmatic hernia.

So download the toolbar and when you do your on-line shopping or searching - you will benefit CDH Medical Research!

Monday, October 26, 2009

A CDH Christmas



If you like this - you can order it for your Christmas Tree or as a gift - please go here A CDH Christmas

Friday, October 23, 2009

Cadan's Halloween Carnival - Fundraiser for Congenital Diaphragmatic Hernia (CDH) Research



This Sunday, October 25 from 2 PM through 6 PM if you are in the area - please go to this great event for kids and those who are kids at heart! Proceeds will benefit the Saint Louis Children's Hospital - Medical Research to help advance the care of infants born with congenital diaphragmatic hernia.

A great article about Tiffany, Rome and of course Cadan is here.

Wednesday, October 14, 2009

Wave of Light October 15 - Pregnancy & Infant Loss Rememberance Day


Please light a candle at 7 PM your time - extinguish it at 8 PM so the little angels will see the light traveling around the world in their honor - on their day - Thursday, October 15, 2009.

Tuesday, October 13, 2009

Cadan's Halloween Carnival - Fundraiser for Congenital Diaphragmatic Hernia (CDH) Research

Oct. 25th, 2009 will be the first annual Halloween Carnival from 2-6 at the Knights of Columbus in Quincy, IL. There will be plenty of entertainment for both adults and children. All of the proceeds will go towards CDH research at Saint Louis Children's Hospital!

In Memory of a beautiful baby boy who has inspired so many - and will make an impact on the future of research of congenital diaphragmatic hernia!

Wednesday, October 7, 2009

2010 Faces of CDH Calendar Now Available


There are two sizes available and lots of beautiful Faces of CDH!

Great gift for relatives, friends, doctors, anyone you know you just don't know what they need! Everyone needs a calendar! (And under $20!)

http://www.cafepress.com/breathofhope.410812838 - $19.99

http://www.cafepress.com/breathofhope.407406393 - $16.99

http://www.cafepress.com/breathofhope/

Also note - these prices are good if you go to or through the Breath of Hope "Shop" - Cafepress sells them in the Marketplace for up to $25.00. (Yes we get our mere commission which is under $1 to $2 each but we want you to get as much savings in today's economy as you can!)

Also - there is a notice on the front of the shop with what was stated as an updated "coupon code" you can use for your order! Please let us know if the code does not work - sometimes these third party sites are a bit unscrupulous!

Interesting Quote ...

Who indeed can harm you if you are committed deeply to doing what is right? - I Peter

Friday, October 2, 2009

United Way Day of Caring - Hand Print Kits & Ribbon Assembly!

September 23, 2009 -

A huge thank you to the Thomas Jefferson Area United Way and the Volunteers who came from the University of Virginia Health Services Library who helped assemble 400 Hand Print Kits and about 1,000 Awareness Ribbons on Cards! Also many thanks to PRA International in Charlottesville who donated the Training Rooms as an area to have these volunteers help with these projects.

The Infant Hand Print Kits:


These will go to the University of Virginia's CMC Neonatal Intenstive Care Unit - all families who have a baby admitted at UVA's NICU receive one of these kits to capture their child's small hand print at birth. We also provide a kit in our Expectant / New Parent Packages for families who have a baby diagnosed with congenital diaphragmatic hernia.

Below are a few pictures of the amazing group assembling ribbons on cards.



They also featured their good work and they should here

Quotes by Ghandi on his Birthday...

Freedom is not worth having if it does not include the freedom to make mistakes.

I object to violence because when it appears to do good, the good is only temporary, the evil it does is permanent.

In the attitude of silence the soul finds the path in a clearer light, and what is elusive and deceptive resolves itself into crystal clearness. Our life is a long and arduous quest after the Truth.

It is unwise to be too sure of one’s own wisdom. It is healthy to be reminded that the strongest might weaken and the wisest might err.

Strength does not come from physical capacity. It comes from an indomitable will.

(The last one, I believe explains the amazing strength of these infants and children in battling CDH and their parents for loving them through the battles.)

Wednesday, September 16, 2009

Congenital Diaphragmatic Hernia Awareness - What it Takes

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. --Margaret Mead

Now go here and sign to send your Representatives an email letter (you can edit) supporting a National Congenital Diaphragmatic Hernia Awareness Day for March 31, 2010.


You can also email us to get a Sample Letter (you can also edit) and Sample Proclamation to send your State Governor and Mayor to have your state or city issue a Proclamation for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day in your area!
boh@breathofhopeinc.com

Friday, September 4, 2009

Community Congenital Diaphragmatic Hernia Awareness Campaign

Why focus in your community? Does everyone in the area you live know about CDH? With the Senate Resolution in Congress right now – there is a stepping stone to make them aware. Writing your Mayor, City Council Members, County Board and Governor to request March 31 to be Congenital Diaphragmatic Hernia Awareness Day is the first step. (Contact us if you want the sample letters to send!)

In March, I was amazed by how many within my area that had been affected by CDH but never knew – Awareness Day and the article that I was interviewed for motivated other survivors to contact us. Some were silent for a long time because they believed CDH was rare, when it truly isn’t.

In my area – Breath of Hope will be participating in the United Way Day of Caring on September 23, 2009. We will have volunteers help assemble handprint kits from tins, labels, Paris of plaster and some work to be donated to the University of Virginia’s Children’s Medical Center NICU. Each family will receive a handprint kit who has their infant admitted to the NICU there. The extra we assemble will go into our Expectant Parent Packages which we have distributed since 2006.

Next March we hope to have more events in my area – grocers who will donate their sales on March 31, a Walk/Run and a Wine Tasting is in the works.

What can you do in your area to help promote awareness of this birth defect? What stores do you visit? Would they go Turquoise for the Day? Hold a fundraiser to either benefit Breath of Hope or a local hospital? Would you like to assemble hand print or foot print kits for your local hospital? Now is the time to plan!

How about educating in your local schools? You can talk of the birth defect and make so many aware, children tell their parents (sometimes) about something new they learned. For older children – the legislative process of obtaining an Awareness Day might fall in line with Social Studies Teaching. How does a Resolution or a Bill become law? All sparked by a few determined parents who dared to make a difference.

If you need help, have ideas and need insurance for these events – please feel free to contact us. We have several documents to help promote your events and many ideas that might make it easier, more efficient and fun. We would be thrilled to help in any way we can to promote your community event. Awareness started at home – now spread it to your community!


Contact us at cdhawareness@breathofhopeinc.com or boh@breathofhopeinc.com

P.S. Is appropriate for this – because this was inspired by the events which the Parker Reese Foundation has listed out there for their fundraisers and events. We will of course try to work around their events but also when you are in other communities the dates and times do not infringe on one another. The more out there – the more we make others aware!

Sunday, August 16, 2009

Friday, July 31, 2009

Congenital Diaphragmatic Hernia (CDH) Awareness - Breath of Hope Website

Our website Congenital Diaphragmatic Hernia (CDH) Awareness - Breath of Hope, Inc has been updated. We have gone from six (6) pages to twenty-five (25) including this blog as a "Page" on the website.

In order not to duplicate information on the blog and on the website we will be streamlining this blog a little bit.

One page, Community Links, is "Soon to Come" we want to have blogs and websites from all those out there who have had children or been touched by CDH listed there. Please email us at boh@breathofhopeinc.com if you would like your blog or website listed.

We will also be offering Ad Space (subject to approval of our Board of Directors) on the site in an effort to support the website expenses, program expenses and medical research that may benefit congenital diaphragmatic hernia.

Much of the information on the website added was taken from our printed materials so it has been reviewed by doctors and staff at the University of Virginia Medical Center Children's Medical Center. We also have had many parents, other health care professionals and outsiders review our materials and we have taken their suggestions to improve our materials for all.

Steve Berry of Denver Website Design originally took the website from a Flash Website to include more. A month ago he came to us saying he wanted to help us take it to a new level of functionality. We believe he has in this latest renovation. This new site, we will be able to update ourselves and add pictures to all the scrolls of the site. We want to thank Steve for his donation in-kind for a good portion of work that was done and is still doing to work out all the backend kinks!

As always - if anyone has any suggestions, we welcome them!

Saturday, July 18, 2009

Parental Perceptions of Social Support

If you are in the Texas Area - there is a Research Study we would like to help recruit families to participate. Please contact the email addresses provided.



June 21, 2009

Dear Parents:



We know that social support is vital for parents who have a chronically or critically ill child in the Intensive Care Unit. As an undergraduate student in the honors program with a major in Psychology at Austin College, I am interested in understanding more about the types of support that are most helpful to parents when they have a child in the ICU. Currently I am working on a project for my senior thesis titled, Parental perceptions of social support: An investigation of what types and sources of social support are perceived as most helpful when a child is in the intensive care unit, where I plan to examine what different sources and types of social support parents see as being more or less helpful in coping with the stress of having a sick child. This project has been approved by the Institutional Review Board at Austin College. The purpose of this letter is to request your participation in the project.



In order to participate in this project, I need both parents involvement. In the past, much of the research has only focused on the experiences of mothers. For this project, I want to make sure to include both mothers and fathers. Your participation will involve one face-to-face interview with the mother and a separate face-to-face interview with the father. Each interview will last approximately 1 hour. In order to make it as convenient as possible, I will come to your desired location on a day and time that works best in your schedule. I ask that spouses not talk to each other between the interviews about anything said in the individual interview, so that you will not be influenced by what the other one said. Once both interviews have been completed, you may talk about the interview. The interviews will be tape-recorded. The tape-recording is necessary for participation in the project. It will be used to ensure that the researcher gets all of information written down accurately. The tapes will be transcribed so that sources and types of support can be accurately coded. When the tapes are transcribed, any information that could be used to identify you personally (such as names) will be removed to protect your privacy.



In addition to the interview, I will need one parent to complete a short background questionnaire. This questionnaire should not take more than 10minutes to complete.



All information will be kept confidential. No names will be used in the research. Each tape and questionnaire will be assigned a corresponding identification number that will be used instead of a name. The tapes and the questionnaires will be kept in separate locked filing cabinets in my advisor's office. Only my advisor, my research assistant, and I will have access to the raw data. In accordance with standard research guidelines, tapes and transcriptions will be stored in a secure file cabinet for seven years. After seven years, they will be shredded.



While I do not believe there is any risk to you in participating in this project, discussing the time a child spent in the hospital can bring up painful memories. If at any time during the interview you become upset and would like to stop, please let me know. We can stop the interview at anytime. Benefits of participating in this project are helping researchers identify sources of social support that were the most helpful and least helpful to parents who had a child in the ICU, in order to help hospitals reduce the stress of parents in this difficult situation. Participation is on a volunteer basis, and you may withdraw your consent at any time without penalty. When the study is completed, a brief summary of our findings will be provided to you upon request. Thank you for your time. You are welcome to e-mail Caitlin Tabor atctabor@austincollege.edu or my advisor, Dr. Jill Schurr at jschurr@austincollege.edu with any questions or concerns.



Sincerely,

Caitlin E. Tabor

Undergraduate Student

Jill K. Schurr, Ph.D., Advisor

Thursday, July 2, 2009

Senate Resolution 204 - National Congenital Diaphragmatic Hernia Awareness Day

SRES 204 IS
111th CONGRESS
1st Session
S. RES. 204
Designating March 31, 2010, as ‘National Congenital Diaphragmatic Hernia Awareness Day’.
IN THE SENATE OF THE UNITED STATES
June 24, 2009
Mr. VITTER submitted the following resolution; which was referred to the Committee on the Judiciary
RESOLUTION
Designating March 31, 2010, as ‘National Congenital Diaphragmatic Hernia Awareness Day’.
Whereas the congenital diaphragmatic hernia birth defect is one of the most prevalent, life-threatening birth defects in the United States;

Whereas the congenital diaphragmatic hernia birth defect is a severe, often deadly birth defect that has a devastating impact, in both human and economic terms, affecting equally people of all races, sexes, nationalities, geographic locations, and income levels;

Whereas the congenital diaphragmatic hernia birth defect occurs in 1 in every 2,000 live births in the United States and accounts for 8 percent of all major congenital anomalies;

Whereas, in 2004, there were approximately 4,115,590 live births in the United States, and in approximately 1,800 of those live births, the congenital diaphragmatic hernia birth defect occurred, causing countless additional friends, loved ones, spouses, and caregivers to shoulder the physical, emotional, and financial burdens the congenital diaphragmatic hernia birth defect causes;

Whereas there is no genetic indicator or any other indicator available to predict the occurrence of the congenital diaphragmatic hernia birth defect, other than through the performance of an ultrasound during pregnancy;

Whereas there is no consistent treatment or cure for the congenital diaphragmatic hernia birth defect;
Whereas the congenital diaphragmatic hernia birth defect is a leading cause of neonatal death in the United States;

Whereas 50 percent of the patients who do survive the congenital diaphragmatic hernia birth defect have residual health issues, resulting in a severe strain on pediatric medical resources and on the delivery of health care services in the United States;

Whereas proactive diagnosis and the appropriate management and care of fetuses afflicted with the congenital diaphragmatic hernia birth defect minimize the incidence of emergency situations resulting from the birth defect and dramatically improve survival rates among people with the birth defect;
Whereas neonatal medical care is one of the most expensive types of medical care provided in the United States and patients with the congenital diaphragmatic hernia birth defect stay in intensive care for approximately 60 to 90 days, costing millions of dollars, utilizing blood from local blood banks, and requiring the most technically advanced medical care;

Whereas the congenital diaphragmatic hernia birth defect is a birth defect that causes damage to the lungs and the cardiovascular system;

Whereas patients with the congenital diaphragmatic hernia birth defect may have long-term health issues such as respiratory insufficiency, gastroesophageal reflux, poor growth, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities;

Whereas the severity of the symptoms and outcomes of the congenital diaphragmatic hernia birth defect and the limited public awareness of the birth defect cause many patients to receive substandard care, to forego regular visits to physicians, and not to receive good health or therapeutic management that would help avoid serious complications in the future, compromising the quality of life of those patients;
Whereas people suffering from chronic, life-threatening diseases and birth defects, similar to the congenital diaphragmatic hernia birth defect, and family members of those people are predisposed to depression and the resulting consequences of depression because of anxiety over the possible pain, suffering, and premature death that people with such diseases and birth defects may face;

Whereas the Senate and taxpayers of the United States want treatments and cures for disease and hope to see results from investments in research conducted by the National Institutes of Health and from initiatives such as the National Institutes of Health Roadmap to the Future;

Whereas the congenital diaphragmatic hernia birth defect is an example of how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate therapeutic interventions that directly benefit the people and families suffering from the congenital diaphragmatic hernia birth defect;

Whereas collaboration, technological innovation, scientific momentum, and public-private partnerships can save billions of Federal dollars under Medicare, Medicaid, and other programs for therapies, and early intervention will increase survival rates among people suffering from the congenital diaphragmatic hernia birth defect;

Whereas improvements in diagnostic technology, the expansion of scientific knowledge, and better management of care for patients with the congenital diaphragmatic hernia birth defect already have increased survival rates in some cases;

Whereas there is still a need for more research and increased awareness of the congenital diaphragmatic hernia birth defect and for an increase in funding for that research in order to provide a better quality of life to survivors of the congenital diaphragmatic hernia birth defect, and more optimism for the families and health care professionals who work with children with the birth defect;

Whereas there are thousands of volunteers nationwide dedicated to expanding research, fostering public awareness and understanding, educating patients and their families about the congenital diaphragmatic hernia birth defect to improve their treatment and care, providing appropriate moral support, and encouraging people to become organ donors; and

Whereas volunteers engage in an annual national awareness event held on March 31, making that day an appropriate time to recognize National Congenital Diaphragmatic Hernia Awareness Day: Now, therefore, be it

Resolved, That the Senate—

(1) designates March 31, 2010, as ‘National Congenital Diaphragmatic Hernia Awareness Day’;

(2) supports the goals and ideals of a national day to raise public awareness and understanding of the congenital diaphragmatic hernia birth defect;

(3) recognizes the need for additional research into a cure for the congenital diaphragmatic hernia birth defect; and

(4) encourages the people of the United States and interested groups to support National Congenital Diaphragmatic Hernia Awareness Day through appropriate ceremonies and activities, to promote public awareness of the congenital diaphragmatic hernia birth defect, and to foster understanding of the impact of the disease on patients and their families.

Friday, June 26, 2009

National Congenital Diaphragmatic Hernia Awareness Day

On June 24, 2009, S.RES.204 Title: A resolution designating March 31, 2010, as "National Congenital Diaphragmatic Hernia Awareness Day". Sponsor: Sen Vitter, David [LA] (introduced 6/24/2009) Cosponsors (None) Latest Major Action: 6/24/2009 Referred to Senate committee. Status: Referred to the Committee on the Judiciary. LINK HERE

The text of this document has not changed much from the original Breath of Hope, Incorporated submitted to Senator Vitter LINK HERE

Please feel free to email us at boh@breathofhopeinc.com or cdhawareness@breathofhopeinc.com if you would like to use our sample letter as a guideline to write your State Senator.

Thursday, June 25, 2009

CDH Medical Research Study

Baylor College of Medicine
Daryl A. Scott, MD/PhD
Mail Stop: BCM 227
One Baylor Plaza
Houston, TX 77030
Dr. Scott and researchers in his laboratory are working to identify the genes that cause CDH. A brief description of his research can be found at http://www.bcm.edu/genetics/facultyaz/scott.html. Families interested in learning more about participating in genetic studies aimed at identifying the genes that cause CDH can contact him via e-mail at dscott@bcm.tmc.edu.

Sunday, June 21, 2009

Happy Father's Day from Breath of Hope

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much the old man had learned in seven years. - Mark Twain
By the time a man realizes that maybe his father was right, he usually has a son who thinks he's wrong. - Charles Walsworth
I cannot think of any need in childhood as strong as the need for a father's protection.
- Sigmund Freud
When a father gives to his son, both laugh; when a son gives to his father, both cry.
- Jewish Proverb

Monday, June 15, 2009

A PHONERAISER FUNDRAISER

Want to help us raise funds without spending anything? No cost to you - just a bit of time - as much or as little as you want to give!

We will be collecting used cell phones, i-phones - even if they are broken and ink jet cartridges (size of your hand, please)! Keep them out of our landfills and Breath of Hope will have them recycled to continue to support CDH Families!

The economy is still in a rut - this is a way you can donate without it cutting into your budget! You can collect them at work, church, baseball, soccer or any other youth type event! Meanwhile you can spread some CDH Awareness! It is a guarantee someone will ask you what CDH is!

We are not asking for donations of funds - but of something others might just throw away and it is not safe for cell phones or ink jet cartridges to go into our landfills! They pollute the water, air and soil. So - you will be helping the environment AND helping a fundraiser!

If you want to help - please contact us at cdhawareness@breathofhopeinc.com

We have Press Releases, promotional emails you can send or letters to businesses or others. We have a price list and we have a donation receipt you can print off and give to those who request it!

How do you send them once you have collected them? A shipping label will be given to you - it costs you nothing! Please not just one or two phones - at least 5 or more collected - we don't want this business to pay $8 for one phone shipped to them!

You call the shipper and they pick up and take it away! It is that simple!

Please contact us at cdhawareness@breathofhopein.com if interested in helping us raise awareness, funds and recycle items that would otherwise pollute the environment!

Regards,
Breath of Hope

Sunday, June 7, 2009

Proverb & Quotes...

"A wise man makes his own decisions, an ignorant man follows the public opinion."
- Chinese Proverb
"Faith is the substance of things hoped for, the evidence of things not seen."- The Bible

"Don't give up. Don't lose hope. Don't sell out." - Christopher Reeve

Thursday, June 4, 2009

NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY



Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them. - Ralph Waldo Emerson
Text from the Draft of the Resolution/Bill for National Congenital Diaphragmatic Hernia Awareness Day:
Supporting the goals and ideals of a National Congenital Diaphragmatic Hernia Awareness Day to raise public awareness and understanding of The Congenital Diaphragmatic Hernia Birth Defect and to foster understanding of the impact congenital diaphragmatic hernia has on patients and future generations of their families.
_______________________________________________________________________
IN THE SENATE OF THE UNITED
STATES
_______________________________________________________________________
RESOLUTION
Supporting the goals and ideals of a National Congenital Diaphragmatic Hernia Awareness Day to raise public awareness and understanding of the congenital diaphragmatic hernia birth defect and to foster understanding of the impact congenital diaphragmatic hernia has on patients and future generations of their families.
Whereas congenital diaphragmatic hernia (known as “CDH”) is 1 of the most prevalent life-threatening birth defects in the United States, is a severe, often deadly birth defect that has a devastating impact, in both human and economic terms, it affects equally people of all races, sexes, nationalities, geographic locations, and income levels;
Whereas congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics), this translates to approximately 1,800 live births with the congenital diaphragmatic hernia birth defect. Countless additional friends, loved ones, spouses, and caregivers must shoulder the physical, emotional, and financial burdens congenital diaphragmatic hernia causes;
Whereas congenital diaphragmatic hernia which there is not a genetic indication, or anything that could predict this birth defect other than ultrasound during pregnancy there is no consistant treatment or cure, is a leading cause of neonatal death in the United States;
Whereas fifty percent of those patients that do survive the congenital diaphragmatic hernia birth defect have residual issues, causing a severe strain on pediatric medical resources and on the delivery of health care in the United States;
Whereas proactive diagnosis and appropriate management of fetuses with congenital diaphragmatic hernias minimizes the incidence of emergency situations, dramatically improving survival rates;
Whereas neonatal medical care is one of the most expensive care in the United States and congenital diaphragmatic hernia neonate stays average of sixty to ninety days in intensive care, costing millions of dollars, utilizing blood from local blood banks and requiring the most technically advanced medical care;
Whereas congenital diaphragmatic hernia is a birth defect that causes damage to the lungs and the cardiovascular systems, patients may have long-term sequele such as respiratory insufficiency, gastroesphgeal reflux, poor growth, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities;
Whereas the severity of the symptoms, outcomes and results of congenital diaphragmatic hernia and the limited public awareness of the birth defect cause many patients to live with substandard care and forego regular visits to their physicians or to avoid following good health management or therapeutic management which would help avoid more severe complications when in the future and compromises the quality of life;
Whereas people and families who have chronic, life-threatening diseases and birth defects or care for those who do, similar to congenital diaphragmatic hernia have a predisposition to depression and its resultant consequences due to their anxiety over pain, suffering, and premature death;
Whereas the Senate and taxpayers of the United States desire to see treatments and cures for disease and would like to see results from investments in research conducted by the National Institutes of Health (NIH) and from such initiatives as the NIH Roadmap to the Future;
Whereas congenital diaphragmatic hernia is a verifiable example of how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate therapeutic interventions that directly benefit congenital diaphragmatic hernia sufferers and their families, save billions of Federal dollars under Medicare, Medicaid, and other programs for therapies, early intervention and increased survival rates;
Whereas improvements in diagnostic technology and the expansion of scientific knowledge and management of care of congenital diaphragmatic hernia have increased the survival rates in some of these cases, there needs to be more research and awareness of this birth defect to increase the funding needed give a better quality of life to those who survive and more optimism to the families and health care professions who work with these children first hand;
Whereas there are thousands of volunteers nationwide who are dedicated to expanding essential research, fostering public awareness and understanding of congenital diaphragmatic hernia, educating congenital diaphragmatic hernia patients and their families about the disease to improve their treatment and care, providing appropriate moral support, and encouraging people to become organ donors; and
Whereas these volunteers engage in an annual national awareness event held during the month of March and more specifically the 31st Day of March, and such a month or day would be an appropriate time to recognize National Congenital Diaphragmatic Hernia Awareness Day:
March 31st therefore, be it Resolved, That the Senate—
(1) designates the day of March 31, as ``National Congenital Diaphragmatic Hernia Awareness Day'';
(2) supports the goals and ideals of a national day to raise public awareness and understanding of congenital diaphragmatic hernia (known as ``CDH'');
(3) recognizes the need for additional research into a cure for congenital diaphragmatic hernia; and
(4) encourages the people of the United States and interested groups to support National Congenital Diaphragmatic Hernia Awareness Day through appropriate ceremonies and activities, to promote public awareness of congenital diaphragmatic hernia and to foster understanding of the impact of the disease on patients and their families.
_______________________________________________________________________
RESOLUTION
Supporting the goals and ideals of a National Congenital Diaphragmatic HerniaAwareness Week to raise public awareness and understanding of Congenital diaphragmatic hernia and to foster understanding of the impactCongenital diaphragmatic hernia has on patients and future generations of their families.
_______________________________________________________________________