Doctors, Families Rally for Cure for Deadly Birth Defect

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

Friday, January 27, 2012

Angel Luke - Face of CDH

Many parents of children who are diagnosed with congenital diaphragmatic hernia find there appears to be some divine intervention which evolves.  From the hospitals we choose, to the random people who come into our lives to make us feel not as alone, confident we can take on anything this diagnoses brings us and who just make our lives better in the worst situation we find ourselves in.  Jean, Luke's Mommy, is probably one of the most supportive CDH parents out there.  She is the hugest advocate for CDH Awareness and Education and she has the most wicked sense of humor.  You have to have a sense of humor to have 9 children!  Yes, nine!  Here is her amazing son's story - grab a tissue box and know you will have tears, smiles and chills just reading it!

In Luke's Mommy's words: 

While I was spending my last hours with Luke, I was trying to keep my wits about me and trying to think of everything that needed to be done before I could let him go. We had Luke baptized by the Priest on call at the hospital and then he had to leave but gave me his pager number to call him whenever I needed or wanted him back.  Before I could let Luke go, I had to make sure that all my other kids were in one place together.  The younger six were with my oldest sister at her house and my older two stayed at our home.  They both work full-time and being 18 and 19 and they can stay home by themselves. I wanted to be sure that Ralph and Robert got to my sister's home.  I wanted them to all be together when they heard the news.

I wanted a priest to come in and just say a few words to help Luke on his way to join all the other angels.  A friend from my parish in Owensville was up at the hospital with us and she was trying to get in touch with our Parish Priest.  No one in Owensville could find him. She kept trying to find him but she also started calling a few other Priests from neighboring Parishes with no response.  The hospital chaplain tried to contact the on-call Priest who had come by earlier to baptize Luke but had left.  For the first time in 12 years, the pager system went on the blink. Heidi (my friend) one of my sisters and some of the nurses in the NICU started calling around looking for a Priest for me, not one could be found.  Like a police officer, whenever you need one, there's never one around.  One surgeon who had evaluated Luke earlier in the day and gave me the news that there was nothing more that could be done for Luke and one of Luke's nurses from earlier that day, went out looking for a priest for me. Both the surgeon and nurse were off for the day. 

A few blocks from the hospital there is New Cathedral in St. Louis.  The surgeon and nurse went there to find a Priest.  (They told me they would “hijack” a Priest for Luke.)  They could not find one there. So they came back, meanwhile, my Parish Priest still was nowhere to be found.  A Priest from a town down the road called Heidi back but he was on vacation and 200 miles away from St. Louis he did offer to come if I really needed him, he'd start traveling back right away. The on-call Priest was finally contacted, he was at his Parish but he was in the middle of a marriage class and he said he'd come in but he was on the other side of town.  My niece had called her mother and my other sister, the Minister from their church would be happy to come in if I wanted, he wasn’t Catholic.  Not that I would have minded, I wanted a Priest if at all possible.  My other sister's husband (who was at the hospital with me) had called their Parish Priest and he was prepared to come into the hospital for me.

While all this was going on, I had five Priests are coming, we get news that the same nurse who had gone looking for a Priest earlier, went back to the New Cathedral and was waiting in the parking lot when she saw a Priest heading for his car. She stopped him and she explained to him what was going on.  He dropped everything and came to the hospital. So now I have a Priest coming to say a few kind inspirational words to help Luke get those wings of his and fly up to heaven. Ironically, this Priest was not a Priest but a Bishop. Yes, one of the NICU nurses from St. Louis Children's Hospital in St. Louis hijacked a Bishop for a patient.  This Bishop was heading to an important meeting and dropped everything to go with this nurse. She must have been pretty convincing. 

Another part of this irony, this Bishop twenty years ago was a Parish Priest at the Parish where I grew up.  He was the Parish Priest that twenty years ago married my husband and me. So Bishop Hermann got to the hospital and he had no idea he was going to help comfort two people who he married twenty years ago.  He said some of the most beautiful inspirational words to help my little boy on his way to heaven.

So I started thinking God knew and still knows I was not very happy with Him because of all that went on with Luke so I think God sent me a bishop to appease me a bit. Not too many people get a "hijacked" Bishop to come to the NICU and say a few inspirational words over their dying son. Even though I still do not have the answer to "WHY?" Luke, I did get a "hijacked" bishop. So I haven't given up on God yet and I very much doubt I ever will.  I'm still very angry with Him and I think it’s going to be that way for a long while. I hope I haven't offended anyone with my story but it was just a little something that has kept me going and I wanted to share it. My faith has taken a blow but it’s still there and with time it'll come back and probably twice as strong. The one point of this story is I'm working my way back slowly into the world and with all of your love and support and the love and support from my family and friends, I'll get there.

Jean - Mother of nine!!! Eight Earthly Angels(Ralph,
Rob,Nick,Abby,Anna,Clint,Joe,Sophie)-One Heavenly Angel-Luke Matthew
6/12/2007-6/12/2007-FOREVER IN OUR HEARTS!!!!!

Tuesday, January 17, 2012

Daphne, One Determined Little Girl!

The Start - in the NICU

In her parents own words: 
Daphne Angela is our 2 year old Earthly Angel.
Daphne's Congenital Diaphragmatic Hernia (CDH) was diagnosed in-utero in the 33rd week of pregnacy. Her CDH was left-sided with all of her intestines, her stomach and her spleen in her chest cavity, displacing her heart and crushing her lungs. Daphne was born at 38 weeks, just before midnight on September 23, 2009, at Evanston Hospital in Evanston Illinois. Evanston Hospital was the closest hospital near us with a Level III NICU. It was several weeks before Daphne was stable enough for her first CDH-related surgery. Her first hospitalization lasted until the very end of November 2009. Following her discharge, she required physical, occuptional, and feeding therapies, as well frequent follow-ups with her pediatrician, pediatric surgeon, pediatric GI, pediatric cardiologist, and pediatric ENT. CDH-related complications required Daphne to undergo additional medical procedures in June, July and August 2010, and, thankfully, her g-tube was removed on August 27, 2010.

Thanksgiving 2010 was a wonderful time and we celebrated it with family. Daphne was walking and even climbing on furniture, and she had so much fun with her little cousins.
On December 16, 2010, just when we thought everything smooth sailing, Daphne started having strange symtoms involving gagging, lethargia, and she absolutely refused to eat or drink. We took her to the ER by our home. The doctors admitted not knowing too much about CDH-related complications and, at first, told us to go home and said it was "just a stomach bug". However, after insisting on further testing, Daphne was admitted for observation. By 4 AM on Saturday, December 18, 2010, Daphne was in critical condition and needed to be transported to a hospital with a dedicated pediatric intensive care unit (which turned out to be Comer Children's Hospital at the University of Chicago 20 miles away). It turned out that Daphne had a total bowel obstruction caued by adhesions from her original CDH repair surgery in 2009 which had wrapped around a bend in her small intestine like a tourniquet. Emergency surgery was performed and Daphne was on life support (again) for several days after. Daphne spent Christmas 2010 in the hospital and sufferred complications requiring additional hospitalization until the end of January 2011.

Over the course of this 2011, Daphne continued her struggle to overcome various CDH-related issues and her friends and family remain cautiously optomistic about her future.
Hopefully CDH Awareness Day will help make medical professionals as well as lay people familiar with the condition, its frequency, and its associated long-term complications so that they think outside the box when CDH children become ill without any other apparent explanation.
I want to thank all of the people who run Breath of Hope, Inc. and who share their experiences and valuable insights on this list serve.
-Dina and Barry

Nothing is Stopping her Now! :)

Thursday, January 12, 2012

The Faces of Congenital Diaphragmatic Hernia - Featured Faces of CDH

Breath of Hope will feature a child and their family who has been affected by congenital diaphragmatic hernia each week (or more if we receive more submissions)!  We continue to put a Face to CDH to achieve more awareness. 

If you are a parent who would like to participate, please send your child's photos and information to you can submit as much about their story or as little too.  Just their first names, hospital they were treated and birthdays are enough with photos but if you would like to share more about your journey with CDH, we welcome this too!  Each story and face will be honored here - no two are the same but all are amazing and beautiful!

And remember, if you would like to have your area, state to issue a Proclamation or Resolution to have March 31st as Congenital Diaphragmatic Hernia Awareness Day for 2012, contact us also at - we will send you the necessary documents.  When you receive the documents from your City or State - you keep it - we just would like a picture or scan of the document!  Thank you!

Thursday, January 5, 2012

Benefit for Isaac's Family!

Benefit for Isaac Rhodes Family in Hannibal , MO on Saturday, January 21, 2012 at 7 PM
This is a Bowling Tournament cost is $15 per person for 4 games!

If you are in the area or have friends or family in the area - please share this information!