Doctors, Families Rally for Cure for Deadly Birth Defect

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

Thursday, February 19, 2015

1st Annual Congenital Diaphragmatic Hernia Awareness Night at the Kansas City Royals game for the 2015

Family and Friends…

We are so excited to announce the 1st Annual Congenital Diaphragmatic Hernia Awareness Night at the Kansas City Royals game for the 2015 opening weekend series.  The game will be held Friday, April 17th at 710p.  Proceeds from the ticket sales will be benefiting Children's Mercy Hospital NICU, Kansas City, Missouri in honor of Noah and all CDH Survivors and Angels.  Tickets are now available to purchase for $20(includes all fees) and are in Hy-Vee Box seats.  This game is the first rematch vs the Oakland A’s since the 2014 AL Wild Card Game.  Former KC Royal Billy Butler returns to Kauffman stadium as a member of the Oakland A’s.  The promotion for this game is Buck Night ($1 soda, $1 peanuts, and $1 hotdogs).  Children 32 inches and below do not require at ticket to enter Kauffman stadium but must sit on the lap of an accompanying adult.  Deadline for ticket sales will be Friday, March 20thAll ticket sales must be paid to Tera Linenberger prior to ticket distribution.  We will begin to distribute purchased tickets in mid-March.  Please contact Tera Linenberger at teralinenberger@yahoo.comif you are interested or have any questions.  Feel free to share with your friends and family.  We hope to see all of you at the game!

Congenital Diaphragmatic Hernia is a birth defect for which there is no known cause.  It affects people of all races and socioeconomic backgrounds and occurs in about 1 in 2,000 to 1 in 5,000 live births.  Basically, a baby born with CDH either has a diaphragm that is missing or partially formed.  This allows the abdominal organs to migrate into the chest cavity, which in turn causes undeveloped lungs.  Typically medical costs are $500,000 to $1,000,000 for each baby.  Most NICU stays are 6-12 weeks in length and require multiple surgeries.

Our son Noah Linenberger was born with a Congenital Diaphragmatic Hernia on January 4, 2010.  During delivery Noah’s heart rate dropped with every contraction, and a rapid assisted delivery was required.  After a few difficult moments he was delivered and whisked away to be resuscitated.  After Noah became stable, he was transferred to Children’s Mercy Hospital NICU, Kansas City, Missouri.  Since we were not diagnosed prior to his birth we did not know the statistical outcomes for CDH.  Therefore, our focus was on a day to day evaluation of our son’s status.  The days were very long and seemed to be eternal.  Our focus was moment by moment, with expectations of a breath, hiccup, wiggle, or eyes opening.  We knew there would be no recognition of us, but any response to our voices or touch gave us hope.  Since he was on a ventilator for breathing assistance we were unable to hold, touch, or stimulate him for fear of increasing his breathing difficulties.  As each agonizing moment went by, his team of specialized physicians relayed more information on CDH and decisions we would have to deal with in the upcoming hours.  On day 2, Noah underwent the CDH repair that involved a thoracoscopic procedure that wasn’t very invasive.  Happily, our son was among the few that were able to correct the defect by a primary repair and was discharged from the NICU within a week.  Today, Noah is a happy and healthy little five year old.  CDH babies do not choose to be born and battle this horrific birth defect. Although as a parent that has seen their baby fight their battle, we choose to stand up and raise awareness for Congenital Diaphragmatic Hernia.  Please consider supporting Children’s Mercy Hospital NICU in honor of all CDH Angels and Survivors. - Tera and David Linenberger, Olathe, KS