Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Saturday, August 27, 2011

Announcing - Baylee's Birthday Blessings


We have a new Program at Breath of Hope - Baylee's Birthday Blessings

Emily, Baylee's Mommy will be sending out Birthday Cards to all of our families of angels.  We never want any of our families to feel like no one remembers.  If you are a parent of an angel and on our mailing list, you will receive a card for their birthday.  (Please make sure we have an updated address.) 

If you would like to be on this list, please feel free to email us at and put in the subject line - Baylee's Birthday Blessings.

Thank you Emily!  (And thank the little spirit behind this too - Baylee!)

Wednesday, August 17, 2011

Blackcreek Mercantile & Trading Company Donating a Portion of Profits to Breath of Hope

The wonderful folks at Blackcreek Mercantile & Trading Company are donating a portion of their profits for their small products, such as the above pictured cutting board and oil to Breath of Hope through January 1, 2012. 

I ordered a cutting board and oil.  I adore the cutting board!  It is made lovingly with one solid piece of wood, smooth so when I cut my parsley (picture above) for my famous meatballs, it was a dream to cut them!  No edges on this board to contend with and it is a perfect size!  These are perfect unique gifts for anyone you know!  This board will be something you pass down in your family for generations!

Thank you Blackcreek Mercantile & Trading Company!

Sunday, August 14, 2011

The President of the United States: Pass a Resolution for March 31st to be CDH Awareness Day

For the last 5 years we have diligently promoted Congenital Diaphragmatic Hernia Awareness Day - March 31st.  In it's inception, we never expected the overwhelming response we received from parents, family and those who truly knew how devastating CDH is on the family who helped to support our endeavor.  Our ultimate goal has been to have one day dedicated to Congenital Diaphragmatic Hernia Awareness, to raise awareness, funds for support and to honor those who continue the fight and remember those brave souls who fought a great fight too.

We realize that each year, writing your Governor and your Mayors for your areas to Proclaim March 31st as Congenital Diaphragmatic Hernia Awareness Day is consistently a constant task.  We also know that sometimes in one state, another new family will step up and this gives them the opportunity to receive the Proclamation and the amazing feeling they have when they hold that amazing document!  There is a sense of empowerment and achievement!  All we ask for is a photo of the document - you keep it! 

We also are going to push forward, we want the President of the United States to sign a Perpetual Resolution, we want all of Congress both the US Senate and the House of Representatives to pass the resolution to make March 31st that day.  A day we reflect, remember, rejoice, celebrate and make all aware of the amazing families affected by CDH.

We have again created a new Petition which will send an email to your Representatives in Congress and to the President to make this day happen.  We are seeking at least 5,000 signatures.  We are asking anyone who would like to push this further and personally call their Representatives to contact us for the sample letter and sample Resolution.  We also ask anyone who would like to turn their State Turquoise for CDH Awareness Day 2012, to contact us for a Sample Letter and Sample Proclamation to contact us too.  Making it personal does help further this cause!

Please feel free to go to this link here at and sign and you can contact us at to get the sample documents.

Thank you for all you do everyday to help educate the public, further awareness of this birth defect.  We still have a long way to go but we are making progress!

Sunday, August 7, 2011

Have You Had to Explain CDH to a Health Professional?

We are requesting any family member or caregiver who has had to explain congenital diaphragmatic hernia to a health professional, to please contact us at with your "testimonial".  We are working on grants and intend to use these testimonials to show that not only the general public needs to be made aware of CDH but health professionals too.
It is shocking for parents to take their CDH survivor to an ER and have to explain their child's health history, this could be a matter of life or death.  It is unnerving that some parents have had to explain CDH to an ultrasound tech or an OB doctor.  This needs to change.  It could be a matter of life or death.

If you have such an experience, please contact us so we can make this change!

Thank you!