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!  http://www.dailyshoring.com/how-to-help-during-tragedy-loss-or-illness/

Kindness Project - In Honor or Memory of CDH Children

Recently, the CDH Community as a whole has been rocked by the untimely deaths of children who were older than infants who had fought the good fight and been discharged from the NICU.  Unfortunately, RSV and other issues associated with hospital stays contributed to these children's deaths and we all step back and realize how far reaching congenital diaphragmatic hernia actual is to those who continue to fight it.

The world also has been racked with so much tragedy, too much meanness and too much that we wonder about humanity.  We are devastated to hear of other terror attacks of nations divided on issues that truly we need to ban together if we want solutions.  Pointing fingers does no one any good and only through dialog and being kind and compassionate can we make a difference in this world.

So we thought of an idea, we shared it with other CDH groups and we thought it would give our community members something to actually do that would help spread kindness and also a bit of CDH Awareness in the process too! 

Here is the basic outline of the project and you all can do it as simply or as elaborately as you wish!  You can do it as an individual or get others in your community or schools to help if you wish.  Do a random act of kindness and pass out a card to that person you do it for.  You can do it anonymously if you wish!  Then tell us about it.  As much as you wish or that a random act was done today in Anytown, USA :)  We would love to be overwhelmed with emails or posts to our Facebook Page or messages about your random acts.  You can do this in honor or memory of a child you know and at anytime you wish:  for Awareness Day, for your child's Birthday, for a date or period of time you wish.  It is in your hands to be as organized or as disorganized about it as you wish.  Kindness doesn't have to be organized! 

We provide you materials here that you can use and the Word Documents can be modified and updated to personalize.  The Business Cards we used are from Staples located here but we are positive you can find these at any other office supply store.  If for some reason, you have trouble, need another template or need help with this, please feel free to contact elizabeth@breathofhopeinc.com - we will be happy to help! 

March! It is Congenital Diaphragmatic Hernia Awareness Month!

For seven years families across the United States have been writing their Mayors, Governors and other officials requesting Proclamations to bring awareness for congenital diaphragmatic hernia.  We have always known that from awareness brings more research.  Over the last few decades survival rates have increased from 50% overall to about 67%.  Our NIH is also more involved thanks to the many families who have contacted their legislators and made them aware of this often unheard of birth defect.  It is through the efforts of families and friends who have fundraisers to help families, raise awareness or raise funds for medical research that we educate our communities.  One day we hope families who contact us will have at least heard of CDH prior to their newborn or unborn child being diagnosed.  

This is also a month that many families reflect on the experience of the diagnoses, of when they first became aware of CDH.  To be told your unborn or newborn child may die is not what we expected to hear when we had our ultrasound or gave birth.  Families who have had their child choose wings over feet want to educate others not just in their child’s memory but so others are perhaps more prepared than they.  Those who have a child come home are all too aware of the struggles of taking care of a child with medical needs or if they don’t have them, worried that one of the other accessories which sometimes coincides with CDH will appear.  Some say they “hate” CDH or CDH “sucks”, no argument there it is something battled every day by organizations, hospitals and families.  We hope one day it is more manageable and less mysterious so doctors will not have to tell a family, “we have done all we can do”.  

There is a hidden oasis in the diagnoses, the people and families you meet through the experience are the people you want in your life.  Strangers from across the nation will step up and help when some friends may have bailed on you.  The doctors and nurses we meet on our journey we learn the profession chose them, they go the extra mile and they work hard so all families will bring their babies home.  Their hearts are in it.  

As you reflect on your own awareness this month, also reflect on all the blessings and amazing people who have been brought into your life through CDH.  Congenital Diaphragmatic Hernia is twofold, bad and good – just as life, it is how we roll with it that makes the difference.

If you would like a graphic ribbon with your child’s name on it, as below, please feel free to email Elizabeth@breathofhopeinc.com or Private Message our Breath of Hope Facebook Page.  It is a pleasure to make these for families – they are yours to use any way you wish and we are happy to enlarge them or provide different file formats if you need them for shirts or printing! 

Rare Disease Day - February 28, 2014

Breath of Hope became a member organization with NORD (National Organization of Rare Diseases) in 2010.

By statistics alone congenital diaphragmatic hernia (CDH) is considered a rare or often overlooked birth defect/disease.  For those of us who have had children ten, fifteen and even twenty years ago we know the availability of treatments for CDH infants and survivors has increased.  We know overall the survival rates have also increased to 60% but still not where we would like them.  We also know there are more research studies dedicated to diaphragmatic hernia and pulmonary hypertension today.  We also know that adult survivors seeking medical treatment and long term follow up care are limited.  Most practicing physicians outside the pediatric world have very little experience.  Without collaborating with organizations such as NORD, we would not have the advancements today.

A rare disease in the US is one that has less than 200,000 patients in the United States.  CDH falls into that category.  Pulmonary Hypertension (PPHN) also falls within that category and a high percent of CDH patients have PPHN.

There are 30 million Americans who are affected by rare diseases.  This years international theme for Rare Disease Day is "Join Together for Better Care".  As we celebrate on February 28, we recognize there have been many advancements in medical research and policy developments which give hope to those families affected by CDH and other rare or often overlooked conditions. 

Alone we are rare, together we are strong™

You are welcome to go to this link Press Kit with free downloadable graphics you can share on your blog, Facebook pages or other social media. 

As we celebrate, we also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community. - See more at: http://rarediseaseday.us/about/goals/#sthash.KWrx5JtY.dpuf

this year’s international theme is, Join together for better care! - See more at: http://rarediseaseday.us/about/goals/#sthash.KWrx5JtY.dpuf

this year’s international theme is, Join together for better care! - See more at: http://rarediseaseday.us/about/goals/#sthash.KWrx5JtY.dpuf

We Need More CDH Organizations

Did you know that according to Guidestar there are only three nonprofit organizations for congenital diaphragmatic hernia?  Guidestar may not have new charitable organizations listed or those who have not submitted their information.  How many organizations are there for spina bifida?  One hundred and fifty-four listed in Guidestar and two hundred and ten for cystic fibrosis.  Ask yourself this question, why are more in your communities not aware of CDH? 

What truly is the problem?  

We need more community organizations who work within their areas and with their hospitals to help families and further research from all over.  Local organizations can give back within their own communities and are more aware of what families will need when faced having a CDH baby.  They can outreach to other community organizations for help and resources and work with the hospitals and physicians in their areas.  

Breath of Hope will continue to provide the services we do and the programs we have but we will also be working to help others start up their organizations if they have the desire, enthusiasm and commitment to do so.  Please feel free to contact us at Elizabeth@breathofhopeinc.com and we will be happy to help you!  

Enthusiasm is one of the most powerful engines of success. When you do a thing, do it with all your might. Put your whole soul into it. Stamp it with your own personality. Be active, be energetic, be enthusiastic and faithful, and you will accomplish your object. Nothing great was ever achieved without enthusiasm. ― Ralph Waldo Emerson

Reflection...

Reflection can be painful, but reflection can also be productive. ― Charlotte Pearson

Each year around this time, I always reflect back.  You see, 14 years ago, I had learned of congenital diaphragmatic hernia and knew the unborn baby I was carrying was diagnosed with very severe CDH.  Today is her birthday.  I still have friends who I have known since being diagnosed who also had children who survived and did not survive CDH.  Many of them, I have only known virtually but they have touched my heart in ways some family and friends I have known all my life never could.  You see, our daughter didn’t make it but she did fight the good fight.  Those early years of grief were the worst.  I truly cannot recall much about current events at that time, I was doing a good job just keeping up with the basic things in my life then.  Researching diaphragmatic hernia became my hobby or obsession, not sure which one.   

I’ve looked back on our journey and the basic things Breath of Hope has provided to families are things I felt were needed or not provided during our own journey.  Today, the diagnosis is a bit better if you get to the major hospitals with the experience to take care of these babies.  Today, I know if our daughter was born, she might just be a survivor.  But there are not do-overs or instant replays in this life like that.  I can tell you, I am content today.  I am at peace.  

I reflect back that I never would have chosen to be part of the CDH community but feel today I am privileged to be a member of it.  I also reflect, I would rather have known that beautiful creature for 38 glorious and tragic days then have never had her touch my life at all.  Sometimes our blessings come in disguise.

We are often contacted when a family just learns their unborn or new born baby has been diagnosed with congenital diaphragmatic hernia.  We offer to send them a package with information we compiled from our families, painstakingly edited it and had medical advisers review and edit the information also.  In January, we also had a copy righter review them so they were easier to read.  We also provide infant blankets, hand print kits, Socks for Surgery socks, Guava Infant Mittens and a variety of other things donated by families we have on hand at that time.  We then hope and pray their baby will be of the 60% who will survive.  In some hospitals, it is up to 75% or higher.

Very often parents contact us after their child goes home or becomes an angel and they tell us how much they are amazed with the CDH Community, those that have reached out and encouraged them when they felt helpless or at their lowest.  How they found comfort in the words we wrote them, the items we gave them or the kindness of complete strangers who have this CDH Connection gave them.  How can they ever repay it?  They do, in turn they pay it forward by reaching out, being kind and keeping other babies and families in their hearts.  So much sometimes they must take a break, but they come back.

This blog post is about thanking all of you for reaching out, stepping forward, sharing your wisdom and children with those who just begin this journey forward.  We know not what will happen but we have hope that their child will be one that does pull it out and Kick CDH Booty.  Even the angels do some butt kicking of CDH and are miracles too.

Just remember to take care of you through this all too!  Thank you! 

The Frontline for Hope

A new series is featured Saturday nights at 6:30 on KSDK NewsChannel 5 titled The Frontline for Hope featuring patients, families and the doctors, nurses and staff at Saint Louis Children's Hospital.  The first episode premiered Saturday, March 16 and is now available for all to view on line.  We recognize many of our families and the amazing staff in Episode 1.  < Click on Episode 1 to take you to the website and view but before you do, grab a box of tissues!  

Thank you to those that put this together! 

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!

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!

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 5^thone 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!