Doctors, Families Rally for Cure for Deadly Birth Defect

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

Monday, January 25, 2016

CDH Ring Theory

This isn't a new concept but it is a great way of thinking when dealing with tragedy, illness of a loved one and grief.  Often times at Breath of Hope we are discussing how others insert their foot where it doesn't belong or give advise that truly isn't helpful.  Often times it is dumping in their own issues upon us about our situation.  You don't dump it in - you dump it out from the CDH Ring Theory. 

The Infant, CDH child or adult is the one most affected - therefore they get to dump it all out, vent, yell, cry, complain etc. out to us all - to their parents, to their siblings, grandparents, other relatives and friends.  You always dump out.  Parents can dump their feelings out to their own parents, other relatives, friends and so on.  You never dump it in the circle.  This is a rule to live by.  A wonderful example would be the neighbor who sees that the family next door with the CDH child  doesn't venture out much during the winter.  They may feel compelled to tell the parents that their children need fresh air and germ exposure is a good thing, because it builds immunizes.  (Every last CDH Mom just cringed.)  What this neighbor should have done is dumped out - complain to others but not to this family on their choice of winter time activities (or lack thereof).  What a really great neighbor would do is offer to run errands for the family, if needed or even ask if their other children may want to come over to play, being sure that no one has a cold or virus. 

This goes for grieving families but the parents become the center and they can dump out to us all. 

It isn't guaranteed if you share this CDH Ring Theory others will immediately understand and follow but maybe some will. 

If you do understand, remember there are different rings all the time based upon other circumstances out there.  If you always dump out and try to comfort in - you can never do wrong!

Sunday, September 13, 2015

Critical Thinking...

We always tell families who are newly diagnosed or who have these children who have CDH to be very cautious about what they see out on the Internet.  Often times a study circulates the CDH community that is based upon one study results.  That is not enough.  One studies information may appear to have an answer but the issue is there needs to be more than one to make it conclusive and even then, five may not be enough to verify that indeed there is an answer. 

Recently we saw this story in the news:  Preemies' Survival Rates Improve, But Many Challenges Remain .  Of course, with any medical issue you can say challenges always remain, there is always a risk and there could always be issues still to contend.  Then there was this article that circulated a few days later in the news:  Survival Rate of Extremely Premature Infants Rises which states that the long term issues are not as challenging.  What is a parent to do if they have a baby that is a micro preemie in the NICU right now when they see these two articles?  This is confusing and overwhelming to anyone out there doing research but we must be critical thinkers here.  If it is in the news, it is rare or unusual, otherwise it would not be "news".  Also, always take what you read out there with caution.  Not that it is not true or not fact but it could only be fact or true for that period of time, that instance or in that one study or when pulling curtain statistical information.  This is something that is lacking for most, critical thinking.  We see people forward on information all the time.  Prior to Facebook it was email and the spam type emails we received from Uncle Joe about how they found a cure to cancer.  Now it is crowding our Facebook news feeds.  (If you are on Facebook, for those who are not, out on Google, MSN, Yahoo or if you are still using it AOL.) 

September is Neonatal Intensive Care Awareness Month and we here not only support others knowing about the babies who are treated in NICUs all around the country but have a better understanding of what it is like to be a NICU family. 

Also remember this always, individuals all are different.  We are all unique and how one reacts to a diagnoses or medical issues is not the way we all react to them.  One thing medicine and science can say is that human beings are the variable in everything! 

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