Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

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

Friday, October 18, 2013

We are often contacted when a family just learns their unborn or new born baby has been diagnosed with congenital diaphragmatic hernia.  We offer to send them a package with information we compiled from our families, painstakingly edited it and had medical advisers review and edit the information also.  In January, we also had a copy righter review them so they were easier to read.  We also provide infant blankets, hand print kits, Socks for Surgery socks, Guava Infant Mittens and a variety of other things donated by families we have on hand at that time.  We then hope and pray their baby will be of the 60% who will survive.  In some hospitals, it is up to 75% or higher.

Very often parents contact us after their child goes home or becomes an angel and they tell us how much they are amazed with the CDH Community, those that have reached out and encouraged them when they felt helpless or at their lowest.  How they found comfort in the words we wrote them, the items we gave them or the kindness of complete strangers who have this CDH Connection gave them.  How can they ever repay it?  They do, in turn they pay it forward by reaching out, being kind and keeping other babies and families in their hearts.  So much sometimes they must take a break, but they come back.

This blog post is about thanking all of you for reaching out, stepping forward, sharing your wisdom and children with those who just begin this journey forward.  We know not what will happen but we have hope that their child will be one that does pull it out and Kick CDH Booty.  Even the angels do some butt kicking of CDH and are miracles too.

Just remember to take care of you through this all too!  Thank you! 

2 comments:

jaime guerrero said...

Hello, we just found your site. Me and my wife dound out about a month ir ai ago that our little baby girl Sophia Rose has CDH. We have done lots of internet reseach and our doctors have been very helpful. We drive 4 and a half hours to oklahoma city for all our appts. Sophia Rose is due in dec 29 but we will be scheduled for c section the first or second week of december. Your web site has alot of good info and we would like to thank you for creating it. We ask that you please keep our lil Sophia in your prayers. Thank you!!!!!

Elizabeth said...

Jamie, please feel free to email me at elizabeth@breathofhopeinc.com and we can send you our Care Package which also has lots of info that is helpful and items that help for the NICU stay. We will keep sweet Sophia in our hearts, thoughts and prayers!