Rare Disease Day - February 29, 2011

Breath of Hope has long supported Rare Disease Day and we are a Member Organization of NORD.

Please go to this link and click on the Raise Your Hand and $1 will be donated by Lundbeck to the NORD General Research Fund.  A simple way to help fund research for rare and often overlooked diseases and medical conditions.  Thank you!

14 Week Old Face of CDH - How YOU can help too!

Sir Isaac finally was held by his Mommy last week!  A long time to wait to hold your baby but this family has been through so much in such a short period of time with Isaac.  His grandmother, Chris, submitted an iReport to CNN which we all are trying to get rated higher to possibly have a story on CNN about congenital diaphragmatic hernia and CDH Awareness Day, March 31st.  Please go to this link click HERE to read more of Isaac's amazing story, like this and recommend this and share it any way you can!  If everyone did this little bit - it makes a huge difference! 

Thank you!

Breath of Hope Website

Will be down for maintenance for about 4 - 8 hours today.  Please stay tuned...we will have another special Face of CDH with something you can do to help for CDH Awareness.

Our website will also be re-vamped/updated and we will be asking you all to let us now of fundraisers, events and your own websites and blogs to add to our Community Page!

Thank you!

What a Face for CDH! Abel's Amazing Story!

In his Mom Amber's words:

In April 2010, we found out that we were expecting our 4th child. On , our lives were forever changed. During a routine ultrasound we were told that our son had a life threatening birth defect, the diagnosis was a Congenital Diaphragmatic Hernia. CDH occurs when the diaphragm fails to fully form or close during 7-10 weeks gestation. The hole allows stomach contents such as the intestines, stomach and liver to migrate into the chest cavity which impedes lung development. Congenital Diaphragmatic Hernia occurs in about 2500 births and has a about a 50% survival rate. Due to the severity of his case, Abel was given a 10% chance of survival at birth. After much thought, we decided we wanted to get a second opinion. That is when we met with Dr. John Kinsella and Dr. Jason Gien at Children’s Hospital Colorado . They reassured us that we would remain optimistic until Abel gave us a reason to believe otherwise. We loved the Family Centered Care that CHC offered. We walked out the front door of CHC with a renewed sense of hope. We knew that we were choosing the best hospital, doctors and nurses to care for our son.

Abel was born on October 22, 2010. He was immediately placed on a mechanical ventilator to help him breathe and was transferred to Children’s Hospital . Our priest was on stand-by, waiting to baptize him. 12 hours after birth, we were notified that Abel would need to be placed on ECMO in order to keep him alive. ECMO is a lung/heart bi-pass machine that would oxygenate his blood and allow his heart and lungs to rest for the next 7 days. My husband signed the consent and we waited while he underwent his first major surgery. He was immediately baptized after surgery because it was clear how very sick he was. On day 2 he rested well on ECMO. On Day 3, the doctors discovered bleeding around Abel’s heart. They had to perform a major surgery and open his chest to stitch his pulmonary artery to stop the bleeding. The doctors were now forced to make a very tough decision. Heprin is a blood thinner used in the ECMO circuit to prevent blood clots. Because of the blood thinner, Abel’s blood could not clot and they ran the risk of him bleeding out due to the chest surgery he had just undergone. They needed to decide whether to repair his hernia while he was still on ECMO and then remove him immediately from the ECMO machine or to take him off ECMO then perform his hernia repair. The decision was made that they would repair his hernia while on ECMO then immediately following that surgery, they would proceed to remove him off of ECMO in hopes of stopping the Heprin and allowing his blood to clot. We waited in the NICU waiting room for several hours with our closest family and friends when they performed the surgery. After surgery, Dr. Karrer came out to the waiting room and advised us that in 22 years of doing diaphragmatic hernia repairs, Abel had-by far-the worst case he had ever seen. He wasn’t able to fit his intestines into his abdomin so they were placed in a bag called a silo, outside his body. Dr. Karrer proceeded to tell us that Abel had lost a lot of blood and that he probably wouldn’t make it through the night but he had done the best he could do for him. Within a few minutes the Nurse Practitioner came out and advised us that Abel was bleeding but stable. She looked at us with more empathy than I had ever encountered in my life. She said “It is going to be very touch and go, minute to minute for the rest of the night”. It broke her heart, to break ours. We geared up for the long night ahead and spent time in prayer in the Hospital Chapel. About 30 minutes later, one of the Doctors came out and said “Abel has taken a turn for the worse, he is bleeding from every where. He isn’t going to make it. Do you want to see him?” My husband and I followed her back to his bed spot. His oxygen was at 40% and his heart rate was over 200. We knew it was bad. I walked up to Abel and my first thought was that he needed to hear my voice, he needed to know that we were there. So I began talking to him. I said “Abel, it’s Mommy, I’m right here with you. Daddy’s here too.” I started rubbing his head and his feet. I told him “Keep fighting Son, we’re all here fighting for you, just a little bit longer. You brothers haven’t gotten to meet you yet. We want to see you learn how to ride a bike, swing on the swings, play at the park. . .Celebrate your first Birthday. Keep fighting.” We told him how much we loved him. Abel started to bleed out of his nose, the nurse cleaned him up. As I continued to rub his jet black hair, he started to bleed out of his nose and mouth. This time, I started to clean him up and I realized that this was the moment we had tried to prepare for. In this moment, I knew I needed to be selfless. I leaned down, kissed Abel on the head and I said “Son, if you’re tired, just tell me and I’ll understand.” I needed Abel to know that we would understand if he was tired and couldn’t fight anymore. We needed him to know that it was ok, he had suffered enough. I was asked to step away from his bedside so that they could take an x-ray. Within a few minutes, Dr. Gien looked at us and said that he was stable. We had just witnessed a miracle. Abel had pulled through and he was stable, the doctors, nurses, surgeons and all the NICU staff had never given up on Abel. They continued to work on him, when most would have given up. All because Dr. Gien believed he could still save his life, and he did.

After over 17 weeks in the NICU at Children's Hospital Colorado, enduring over 6 major surgeries in the first 5 days of life and conquering many many medical battles, Abel came home to be with brothers and us on Janurary 24th, 2011.

Although he still struggles with some medical complications due to CDH, he is a normal, happy, outgoing, walking and on-the-go 1 year old.

 

Avery's Breathtaking Story, Another Face of CDH

Avery was not diagnosed prior to her birth.

Avery - 2 hours after her repair surgery.

Eight weeks later she was discharged to go home to her family!

Avery at 11 months!

If you want to follow her story here is her family blog:  click HERE

She is growing more beautiful every day and now she is walking!  Every parent wonders if their child will walk and when they see it for the first time - or any firsts, there are tears of joy!

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!!!!!

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! :)

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 cdhawareness@breathofhopeinc.com 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 cdhawareness@breathofhopeinc.com - 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!

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!

It’s New Year’s Eve. Breath of Hope has lots of plans for the coming year. At the moment families have children in hospitals, some are facing CDH and the unknown, many are rolling up their sleeves and thinking of ideas to raise more awareness, support and helping research. As we reflect on 2011, we have seen tragedy and cried with families. We have prayed for spiritual strength and held our families in our hearts. We have hoped our love and support has helped hearts mend. And we have seen miracles, where no logical person would ever put money down on the odds faced but faith came through! We know miracles happen every day and we cry tears of joy when they beat the odds and go home! We know our information and support gives hope in hopeless situations. To you all who have supported us through 2011, WE THANK YOU. From donations, to invaluable volunteer time and good thoughts and prayers - THANK YOU. You have allowed us to close another successful year of supporting CDH children and their families – our 6th. We wish you joy, peace and prosperity in 2012. We hope you will continue to stand by us.