Local families band together to raise awareness of an internal condition that has affected their family, which too often takes the lives of newborn babies, and ask the public to support a Tote Drive through April 19th benefiting families affected by Congenital Diaphragmatic Hernia (CDH).
To promote awareness and gather supplies for special gifts for families who join the fight of their lives when a baby with Congenital Diaphragmatic Hernia (CDH) is born, a local family is working to have a benefit tote drive. Most people have never heard of CDH and only become aware when they have or know someone who has had a baby born with this deformity. CDH occurs in 1 of every 2500 births and a new CDH baby is born somewhere every 10 minutes; however, there is very little awareness and even less research.
CDH occurs early in pregnancy when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth, the cause is unknown and it can be hard to detect in some cases.
Geanna Johnson and her sister Kelcy Hardin are working to raise awareness and to help these babies and the families affected by CDH.
“What better place to start than in our own community where several families have faced this battle,” stated Johnson.
Johnson and her family personally have experienced the loss of a baby to CDH. She offered her story to help promote awareness of this condition.
“On August 4, 2011, we woke that morning and were so excited to be completing our family with the addition of our second son Miles. Since we had been through this nearly three years ago with our first son Owen, we thought we knew the drill, begin labor, wait, wait some more then when he got ready Miles would join our family.
Eight hours later we were surprised to find that our beautiful and seemingly perfect baby boy would not ever make it home with us due to an internal condition we now know as CDH.”
According to Johnson, statistics show that CDH has a 50% mortality rate and over a half million babies have been born with CDH since 2000. The Johnsons wish to use their loss to help spread awareness of CDH and help other families who have babies with CDH.
“As a parent, there are no words to explain what it’s like to watch a child face this kind of fight and to lose it in the end. We were blessed with Miles for only a few brief hours, and although we cannot change our cherub’s outcome, we would like to use his memory to reach out and help other families that are facing the CDH fight and bring awareness to the condition,” said Johnson.
April 19th is National CDH Awareness Day and in honor of all the babies fighting this condition, Johnson and Hardin have organized a CDH H.O.P.E. Tote Bag drive (Helping Other Parents Expecting) which will run through April 19th. This drive will assist families expecting babies born with Congenital Diaphragmatic Hernia by providing them with much needed free information and support items. This drive is a community project held in conjunction with the non-profit CDH support organization CHERUBS.
Tote bag items will be mailed to families who are expecting babies born with CDH or who have newborns still hospitalized and battling Congenital Diaphragmatic Hernia.
Donation sites are set up in Brownwood at Citizen’s National Bank, Davis Morris Funeral Home and also at Kidz Town in Early off of Longhorn Drive.
Wish list of items needed and included in tote bags:
Disposable Cameras
Baby Blankets (any material but wool)
Button up newborn or preemie shirts
Small or preemie pacifiers
Travel packs of tissues
Chapsticks
Plaster Handprint and Footprint Kits
Baby Booties
Baby Hats
Small bottles of hand sanitizer
Small bottles of lotion
Small picture frames (for the baby’s hospital bed)
Baby’s first haircut holders
Small teddy bears
Gas Cards
Restaurant gift certificates (national chains please)
Coloring Pages
All donations are greatly appreciated and can help make a huge difference by showing a family that they are not alone in the fight against CDH.
For information on CDH go to www.cdhsupport.org or www.savethecherubs.org.
