Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective 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, 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 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

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.