Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Thursday, December 6, 2012

Kickin' some CDH Booty - Socks 4 Surgery!


There is a wonderful organization Socks 4 Surgery that provides socks for infants and children who are facing surgery.  These socks are to inspire, bring smiles during an otherwise uncertain and fearful time.  Several of our families have received socks from this amazing organization and we have now received socks to provide in our Expectant/New Parent Packages (pictured above).  To keep the toesies warm and bring a smile to the families, nurses and doctors!  Thank you Socks 4 Surgery and all you do!  Providing hope and comfort in even little ways - it is immeasurable!  You can also follow them on their Facebook Page at this link:  Socks 4 Surgery Facebook

Sunday, September 2, 2012

Fundraiser in Kasas City, MO - BOWLING for CDH!

One of our amazing families is hosting an event in Kansas City, MO in honor of their son Noah click on his name here to see his feature for our Faces of CDH!

You can meet other families, bowl, talk corvettes and CDH!  This event is family friendly and will benefit so many families affected by CDH!  Thank you!

Thursday, August 30, 2012

Yes, it is early but we are hoping to get a jump on this project and are requesting photos of YOUR individual "Face of CDH" for our 2013 Faces of CDH Calendar.  These make wonderful gifts for under $20 and people do take notice of these calendars when hung in offices!  It gives the opportunity for people to raise CDH Awareness.

Please email your pictures to pictures@cdhawareness.org or elizabeth@breathofhopeinc.com (sometimes our email accounts become too full when we request pictures!  The best format is .jpg and we do ask that you sign a release so we can use your photos.  We want both CDH Heavenly and Earthly Angels, even ultrasound pictures if you would like to share your soon to be CDHer! 

We hope to have the calendar out in early November this year and deadline for submissions are November 2, 2012.

Thank you - always!

Thursday, August 9, 2012

Dear Friend,

You have an exciting opportunity to help us make even more of a difference inour community. GreatNonprofits – a review site like Amazon Book Reviews or TripAdvisor – is conducting an awards campaign to identify the top-rated social justice nonprofits in the country.

Won’t you help us participate in the awards by posting a review of your experience with us? The awards deadline is October 31st, 2012. All reviews will be visible to potential donors and volunteers. It’s easy and only takes 2 minutes! Go to http://www.greatnonprofits.org/reviews/write/breath-of-hope-inc/campaign:social-justice-2012/
With your help, we can gain greater visibility in the community.

Thank you!

Tuesday, July 3, 2012

3rd Annual CDH Summit - You can View!

Our 3rd Annual CDH Summit in Colorado was amazing.  We have the following links to the "raw" presentations we had a live stream available for everyone to attend.  Thank you all who tuned in and please bear with these - new technology and we are all learning!  We hope to do this for all future summits too!  Nothing compares to being there and meeting the amazing speakers and other families.  Truly, there is healing and lifelong friends confirmed at these meetings!  No one goes away without a hug!

We would also like to thank each of those that presented information or their stories. 

                            Long Term Care for CDH Children

Susan Marshall, NICU Dietician - CDH Infants - Nutrition for the CDH Neonate

Katie Edic, 29 year old CDH Survivor - also in the above link video footage


Julia Wynn, MS - Certified Genetic Counselor/Research Coordinator, New York Presbyterian Columbia - DHREAMS

Meaghan Russell, MPH, PhDc, Pediatric Surgical Research Laboratories, MassGeneral Hospital for Children and Anna Frangulov, Research Coordinator, Boston Children's - both with the Pediatric Surgical Research Laboratories for the CDH Study

We would also like to thank Amber Burton of Team Abel - Colorado Chapter of Breath of Hope and Eva Schaeffer who both helped to put together all the events and coordinated everything so well!  Your work is invaluable! 

Thursday, May 31, 2012

3rd Annual CDH Summit in Aurora, CO

Our third annual summit will be held in Colorado this year.  The dates are:  Wednesday, June 27, Thursday, June 28 and Friday, June 29th.  Hotel reservations must be made by June 5, 2012.


Please sign up here so we can have an accurate headcount and below is the tentitve agenda:

Wednesday June 27th
9:30am-10:30am Dr. Jason Gien-CDH/PPHN Research Doctor for University of Colorado/Children's Hospital Colorado

11am-12noon Susan Marshall Dietician/Nutritionalist from Children's Hospital Colorado (CDH nutrional info followed by Q&A)

Lunch 12-1pm

1pm-5pm Museum of Nature & Science followed by dinner (we can pick a place and invite families to join us or families can do dinner on their own)

Thursday June 28th
9:30am-10:30am NICU social worker (Name TBD)


10:30am-11am Katie Edic, CDH survivor share her story.
11am-12noon Dr. Crombleholme Fetal Surgeon (This is still being confirmed so times may change) CROMBLEHOLME HAS BEEN CONFIRMED


12noon-1pm Dr. Jason Gien CDH Pediatrician specializing in following CDH children in clinic and long term effects/complications of CDH (this specific topic and time is flexible but it's very important to discuss the long-term care of CDH children)

4pm-8pm Family Dinner/Fundraiser at Cici's Pizza


Friday June 29th

9:30am-10:30am Liz McKelvey NICU Nurse (specialized with CDH babies followed by Q&A)

10:30am – 11:30am Dhreams Presentation (Columbia University) Julia Wynn

11:30am-12noon Fetal Maternal Center & NICU Tour

1pm Zoo (if not attainable, Cherry Creek reservoir picnic pavilion for lunch, volley ball, and fun for all)

**Butterfly release will be scheduled for one of these days!**

Updated May 21, 2012 – still working on details and there could be adjustments to the schedule.

Thursday, May 3, 2012

Chili's Supporting CDH Research in NJ



Thursday, May 17, 2011 from 4 PM - 11 PM
you can present this flyer above to
HOLMDEL CHILI'S
2105 Highway 35, Suite 101
Holmdel, NJ (732) 671-2273
both dine in and take out orders will qualify for Chili's to donate 15% of the sales to Congenital Diaphragmatic Hernia (CDH) Research at The Children's Hospital of Philadelphia! 
Please feel free to share this and pass on to anyone you know!

Thank you!

Friday, April 20, 2012

Volunteers Needed!

We are looking for a few good men and women!

We need volunteers who can dedicate as little or as much time to Breath of Hope.

Main requirement – we would like you to be at least 1 year from your child either coming home from the NICU or the date they chose wings over feet.  We know  through that first year (and sometimes beyond) are still trying to gain their bearings from their experiences.  This stated, we will allow those who are within that year to assist with any of these positions.

Awareness Day Coordinators– we need folks to act as coordinators and distribute our letters, sample Proclamations and help others find their Representatives on-line or find their contact information.  These are slowly evolving positions.  Must have or be willing to learn the basic process of the requests and you will learn detail of how many states and our government work.

State/Regional Advocates – we have a detailed description of this position and it would be working with any Chapters formed and helping to get them started.  These volunteers would also be requested to organize a State/Local event each year so families could meet and great one another.  Of course this would overlap with other positions which also would work with the people who hold this position.  You would also be a go-to person for all local media and families so you can distribute information.

Scholarship Committee Representatives – Primarily would review scholarship applications and help award the scholarships.  Position would also have you research how to promote the Scholarship Program to those who qualify and ideas for fundraising and grants for scholarships. 

Grant Researchers – Individuals who would research for grants available for Breath of Hope to apply, we already have the paperwork to apply for grants.  We just need these individuals to send us the contact information to apply for grants.

Care Advocates and Coordinators – Individuals who can give information and contacts to families who are expecting, moving to other areas or may need practical information about hospitals, OBs, In-Home Nursing Companies, Grief Resources and any other resources that could be needed or required for families.  These individuals would also work with our State/Regional Reps to be sure if our printed materials are needed and/or desired are distributed. 

Editors – do you like to edit, read or reword things to make them clearer?  We would love your input!  To review our reference guides and brochures, website and our Newsletters when they are going to print or out via email.

Fundraising Coordinator – Someone who would help families fundraise for Breath of Hope’s Programs, Medical Research to benefit CDH and also assist families in fundraising for their own family expenses. 

Board Members – We need a few people to add to our Board of Directors!  These are “jacks of all trades” due to the simple fact that Breath of Hope is a smaller nonprofit public charity.  You will review financials, attend Board Meetings (most via teleconference – quarterly or if an issue arrises you may need to attend – not lasting longer than an hour).  Board Members over see all these positions and also are important in the day to day operations of Breath of Hope. 

None of these positions are paid – all volunteer and none are a full-time job unless you wish it to be one!   Family comes FIRST.  We know all too well that family is first.  Email us at boh@breathofhopeinc.com and we will send you an application, which is a formality.  We will also be working on with volunteers to create position descriptions.

Thank you!

Sunday, April 1, 2012

5th Annual Congenital Diaphragmatic Hernia Awareness Day 2012

We want to thank all of our supporters for wearing their turquoise, writing their Mayors, Governors, Congresspeople, having a walk or run, making amazing food for this event and having fun.  It is to celebrate our endurance, our strength, our children's and grand children's strength.  To endure this CDH Journey and each is different, is a huge endeavor.  We also want to thank you all for remembering the angels who blessed this earth for a time too short for us.

We will continue to feature a Face for CDH - please feel free to send in your photos and a short bio or your whole story and we will feature your child here.  Putting a face to CDH makes a huge difference! Email cdhawareness@breathofhopeinc.com

We will also have some volunteer opportunities coming up within the next few weeks to focus more on community get togethers and also next year's 6th Annual CDH Awareness Day!

Again - thank you all!

Tuesday, March 27, 2012

Face of CDH - Noah's Miracle



In His Parents Words: 

The storm began on January 4, 2010, my husband and I was expecting our first child Noah.    With him, being our first born, we had high anticipation about the delivery process and becoming first time parents.  During the delivery we had our worst fear confirmed.  Noah’s heart rate had dropped with every contraction, and a rapid assisted delivery was now required.  After a few difficult moments he was delivered but was whisked away to be resuscitated.  The nurses and doctors confirmed that he had a birth defect known as Left-sided Congenital Diaphragmatic Hernia (LCDH).  Noah was transferred to Children’s Mercy Hospital in Kansas City, MO.

Fortunately, my husband and I 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.  I 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 thorascopic procedure that wasn’t very invasive.  Happily, our son was among the few that were able to correct the defect by a primary repair.  On the morning of day 3 we received a call from the NICU nurse, she told us that Noah was going to be extubated that morning.  As we were driving to the hospital, we noticed the biggest rainbow in the sky.  At that moment we knew that Noah had survived his storm.  We were very blessed that his hospital stay was only one week. 




Our son’s future routine medical examination will include a chest x-ray every six months to make sure there is no reoccurrence.  During his childhood, he will visit a team of specialized physicians that will manage his childhood development.  This team of medical professionals include:  neonatologist, dieticians, psychologist, audiologist, and his surgeon.

CDH is an unpublicized nearly unrecognized devastating birth defect that affects many families every day.  Most people do not know anything about CDH, unless they have a loved one that has been born with this unfortunate defect.  Advances in surgery and therapeutics have not shown great promise.  Therapeutics sustains life minimally.  The future is unknown for diagnostics and treatments.   Worldwide one baby is born with CDH every ten minutes.  The sheer number of infants affected by this disorder should challenge the scientific community to research other avenues of diagnosis and treatment.  Please help our family raise awareness of this monstrous birth defect in honor of the angels and survivors of CDH.

Blessings,

David, Tera, and Noah


We are positive Noah will never stop going forward!

Monday, March 26, 2012

2012 Virtual Walk/Run for CDH Awareness - March 31st

What to do?  Here is one idea from one of the CDH Moms - here is her blog - click HERE

Grab some friends, head out to a local park, neighborhood or anywhere you love to walk and run and run and walk!  Take pictures of you in your turquoise and possibly wearing these or the other "bibs" offered:

If these do not print well for you - please feel free to contact us (cdhawareness@breathofhopeinc.com) and we can send you the originals!  Take pictures and share too! 

Saturday, March 24, 2012

More than One Face of CDH

Sofia - an amazingly beautiful, vibrant child who has defied odds with the support of her amazing family and the doctors and nurses who have been part of her amazing life! 

For the last 5 years to not only increase awareness of Congenital Diaphragmatic Hernia but also the importance of donating blood, this blood drive has supported the community! 

One pint of donated blood can save up to three lives and more if they utilize the blood into blood products which aid NICU babies, burn patients and other surgical patients in need.  The only resource for these products is Human Blood, the synthetic scientific stuff just doesn't work as well in our bodies!  Please click here to sign up and for further information of this blood drive which several CDH Families including Sofia's family are hosting and have hosted in Kansas City - Click HERE


Noah - whose family is also joining in to make this blood drive a success!


We know of one CDH infant who went through a total of 5 gallons of blood and blood product.  Yes, GALLONS of blood - for an infant.  Many do not realize that the most fragile of infants utilize a tremendous amount of blood in the hospitals, it saves lives and also gives many families the opportunity to know and love their children for the short duration of their lives on this earth.  It is a gift you can give and it cost nothing but about an hour of your time!  You will feel good doing it and perhaps get some juice and cookies after!  Thank you!

Wednesday, March 21, 2012

Face of CDH - Whitney Kaholumehekainani


Our journey started at week 21 gestation when my husband and I, along with our moms, went to the Dr. for the anatomy ultrasound. It’s a girl! We were beyond happy. Our moms left to tell everyone and then the Dr. talked to me and my husband. He said they see a mass in our baby’s chest or bright spot on her left lung; calling it Congenital Cystic Adnomatoid Malformation (CCAM). We were referred to a specialist, a perinatologist who confirmed it and told us all about it.
A month later, at week 25, we went back for another ultrasound and saw a different Dr. They saw fluid around the CCAM and referred us for an echocardiogram because her heart was pushed over to the left. The heart ultrasound saw that baby’s heart was developing normal and that the CCAM was pushing it. They say the CCAM is not fatal and that it would probably shrink in size and be just fine by birth.
At week 28 we had another ultrasound with different Perinatologist Dr. While doing the ultrasound, the technician saw something else in the picture so she asked for another one’s second opinion. They were being mysterious and wouldn’t say anything to us. I thought to myself that“as long as it wasn’t life-threatening it’d be okay.” They told us that we had to wait for the Dr. to come in and tell us. I remember this like it was yesterday. When the Dr. finally came in he studied the pictures and did his own ultrasound also not saying anything to us. In his office he told us it was right-sided Congenital Diaphragmatic Hernia, which is life-threatening. Not a CCAM at all. This Dr. explained it all very well to us while I cried the whole time, and I cried the rest of the day. :(
After seeing 5 different Dr.’s, only the 5thone finally gave us the true diagnosis. It’s a very rare birth defect and I was referred to the only hospital in the state that could care for us. My husband and I met with a ton of different doctors that would help care for our baby when she arrived. Of course I did tons of research on the diagnosis. The doctor’s and nurses had little hope; all the research had very little hope for a right-sided CDH baby, I almost felt hopeless. The neonatologist started talking about comfort care instead of all the scary, painful, and risky procedures to save my baby’s life. I was confused and scared. But this one time, when I went to a book store and picked up a book about infant loss, I suddenly put it back, crying, and decided that my baby would live and that I would do everything possible to help her. I had an MRI done that told us more about Whitney’s hernia. Basically, her liver and intestine were developing in the chest, so both lungs were small, one more so than the other and her heart was entirely to the left. I also got two steroid shots about 4 weeks before the birth to try to help her lungs grow. I had an Amniocentesis done to make sure there were no chromosomal abnormalities. I drove 30mins, both ways, twice a week for ultrasounds and Non-Stress Tests. I also bought a few “new baby” items to help me prepare for having a baby come home, although; they were basically telling us to buy a casket instead of a crib. I also prayed a lot. I mostly prayed for comfort and understanding and the courage to accept God’s will. This sort of thing is, understandably, extremely hard on first time parents.
When we picked Whitney’s middle name, we knew we wanted it to be Hawaiian. Thomas is part Hawaiian, so we were thinking family names. But they didn’t seem to fit. His dad told we could just make one up. So one day my husband asked me to tell him a meaning and he would research it. I said that Whitney is “Strong and Beautiful like the ocean.” Translated to Kaholumehehkainani.
I was induced at 40 weeks and after a few short hours of labor; Whitney was born on Wednesday, July 21, 2011 at 3:09PM, weighing 6lbs 10oz. I’m grateful I was able to have her vaginally and that my husband was able to cut the cord. And then they intubated her immediately. All I could do was look at the backs of several Doctors surrounding my newborn girl. I do remember one nurse watching me while I was sobbing. I wondered what she was thinking. I held Whitney’s hand for a few precious seconds before they took her away to the NICU. I continued to cry, so much that I couldn’t even talk. I wanted to tell Whitney to be strong and that I love her and that I need her. I wanted to ask her if she was okay. I was so scared for her.

I wasn’t able to see her for quite a few hours afterwards because I had gotten an epidural. My whole family was with me but I didn’t want them to see her before me. Eventually I did see her and so did our families. Even though my husband and I were exhausted, we took turns taking every one back one at a time because we didn’t know if Whit would make it through the night. From then on, it has been a roller coaster for everyone, especially Whitney. The next morning, I signed papers for Whitney to be put on the ECMO machine. My husband wasn’t there but I had already decided to do everything possible to save her life. That afternoon, before she was even one day old, they hooked her up to that heart/lung bypass machine. I was discharged but they let us stay in a special room for parents of critically ill babies. Whitney was able to be weaned off ECMO at six days old. The neonatologist told us“these babies have maybe a 20% chance to survive.” I whispered... So there’s a chance. Somehow, I just knew she would survive. On day seven they performed the CDH repair surgery. They repaired her right side with a large gortex patch. They said that they were confident that Whitney would heal very well. I always asked Whitney to promise me that she’d be “okay.” I know it was asking a lot of her and I feel bad about it, but anytime there was a big hurdle, I asked her. I don’t want to list all the details of every little medical thing but like I said previously, it’s a roller coaster, and not a fun one at that! I was always asking Whitney if she was okay. I called the NICU all the time and just asked if she was okay. I just needed her to be okay, and they always told me that she was “critical but stable.” I know that she was never alone and it helped to picture Heavenly Father holding her in his arms. 
I spent as much time as I could by her side. Holding her hands, singing to her, reading to her, praying with her, and crying with her. Thinking back on it I wish I would have spent even more time with her. But all the nurses there said that my husband and I and our family were there more often than any other parents. So after 2 weeks, they kicked us out of the room at the hospital. We lived 30 minutes away and that was way too far for us, but we didn’t qualify for the Ronald McDonald house. Luckily we had a good friend who lived nearby the Hospital. We stayed with her for the next few weeks until we were satisfied that Whitney would survive.
I held my daughter for the first time at 15 days old. The first time I heard her voice was when Whitney was 3 weeks and 2 days old when she was ex-tubated. The first time that I was certain she was going to be okay was when she could breathe on her own; she was off of oxygen, if only for a couple days. The first time I was able to feed her. Her first bath. All of these things were miracles. It took about 1 ½ months to move from the NICU to the Annex, where babies are just working on feedings and getting ready to go home! So, to make a really long story short, Whitney came home when she was about 2 months old, a total of 56 days in the hospital. She came home dependent on oxygen and a monitor. We made a huge banner and hung it on the house. A lot of family members were there to same this special moment with us. 

And a new adventure began! She struggled with eating for a really long time. At 5 months old she needed a feeding tube. That also has been a roller coaster ride with many ups and downs. Whitney was gagging, vomiting, and had oral aversions. Within Whitney’s first year of life she needed many tests and procedures. She is weaned of oxygen and is on Silenafil with a Cardiac Cath to balloon open her left pulmonary artery. She has a G-tube and is completely dependent to survive. She is pretty small for her age but is growing steadily! She is on prevacid and bethanechol for GERD. She’s needed x-rays, Modified Barium Swallow Studies, Upper GI’s, Endoscopey’s, echo’s, and synagis shots. She continues to make progress with feeding therapy, speech therapy, and occupational therapy. She graduated Physical therapy by one year of age! Even though Whitney has some special needs, she is a very smart and happy little girl! We are so grateful for her and thank God every day. I knew it wouldn’t be easy, but it is worth it!

We agree wholeheartedly! 


Friday, March 2, 2012

Another Face of CDH - Gibson, an Amazing Warrior

Gibson in the NICU

Gibson's x-ray after surgery

Very proud Dad and Mom!

I have business to do!

Don't you wish you could wear this look this well?

In his parents words:

Our son, Gibson Jones, was diagnosed with a left-sided Congenital Diaphragmatic Hernia (CDH) at our twenty week ultrasound. We were told his chances of surviving this journey were extremely low. He was given a ten percent chance of living. Before this day we had never heard of a CDH. It has changed our lives forever.

We searched across the United States to find a medical facility that could handle such a serious condition and after being referred to a team of physicians and nurses in Salt Lake City, we discovered that the best team in the world was located just 200 miles south of us. Because we had found a highly qualified team of doctors and equipment, we relocated to Salt Lake during the last month of the pregnancy. Gibson was born March 31, 2011, in Salt Lake City at University of Utah Hospital and was then transported to Primary Children's Medical Center where he spent the next few months. As destiny would have it, this was National Diaphragmatic Hernia Day.

 Gibson had a rough start at life and required extracorporeal membrane oxygenation (ECMO), which is the strongest form of life support, when he was only six hours old. He was on ECMO for four days and it would have been longer, but he developed a brain hemorrhage and had also suffered a cerebellar stroke. He was taken off of ECMO and later that evening had a pulmonary hemorrhage. He was dying. The nurses and doctors had done everything they possibly could, but nothing was working and we all feared we would lose Gibson that night. Thankfully, a brilliant and talented surgeon was on-call that night and gave Gibson a special gift. He agreed to do Gibson's diaphragm repair surgery even though he was likely not going to survive the surgery; but he was definitely not going to live without it. To everyone's surprise, Gibson survived the surgery. Gibson survived the next twenty-four hours. Gibson survived his brain bleeds. He also survived pneumonia, a bowel obstruction surgery, and three months in the Neonatal Intensive Care Unit (NICU). He made an amazing recovery. We had a miracle baby!
When Gibson proved he was ready to come home, he required oxygen, had paralyzed vocal cords, and a feeding tube because he had an oral aversion. He was on eight different medications and was still very weak. Seven months later, Gibson has a permanent feeding tube in his belly and is learning how to eat normally. Due to the CDH, Gibson’s left lung was unable to develop normally. He is still on oxygen because of the undersized left lung, but he is getting stronger and is requiring less assistance. His left lung has grown some and his right lung has grown to compensate for the lack of the left. Our goal is for him to be off of oxygen completely in the coming months. Developmentally, Gibson has caught up with children his age and is as busy as any other little boy. He is so happy and so full of life. He has made us the proudest parents in the world and he is our little miracle.

 We are so thankful for modern medicine and the many, many doctors and nurses who took amazing care of Gibson while in the NICU at Primary Children’s Medical Center. They went above and beyond for our family and completely fell in love with Gibson. 

We have fallen in love too!



Tuesday, February 28, 2012

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!

Sunday, February 26, 2012

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!

Tuesday, February 14, 2012

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.

 

Wednesday, February 1, 2012

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!

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 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!

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!