Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

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

Saturday, December 31, 2011

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.

Tuesday, December 20, 2011

Happy Hanukkah from Breath of Hope!

Wishing those who celebrate a very happy Hanukkah!

Tuesday, November 29, 2011

Will you help?

If you are out cyber shopping (which appears to be safer than going out to some malls and shopping centers), we have several amazing fundraisers which you can purchase items for gifts for someone else or yourself!


A portion of their small product merchandise sales will be donated to Breath of Hope until January 2012! Their connection to congenital Diaphragmatic Hernia? Aunt to a CDH Survivor, Em!


Their cutting boards are amazing. They are carved from one portion of wood which makes cutting on them very smooth. Their cutting board oil comes in Lemon or Rosemary and is equally amazing. When you use it on not only cutting boards but other wooden items, it absorbs into the wood, leaving very little oil behind for clean up. These would make wonderful gifts for the cook or someone who has most everything! You can go to their blog here for more information on ordering from them. Their service is also impeccable! Click HERE.



Do you have a cook in the family? Someone you know who just moved into their own house or who would like some truly amazing items. Pampered Chef has something for anyone!






Grilling Gift Set is $20.00, Apple Wedger - great for the apple lover or parents $13.00, Cut-n-Seal - great for sandwiches for kids $9.50, Dripless/Pourer Stopper for your favorite wine $10.50. These are just a few of the amazing items you can give as gifts for someone special or yourself! Go to this Link HERE Click "Shop On Line" and enter "Breath" - Spend $60 and get a FREE classic batter bowl or measuring cup set with your purchase! Click on the "Guest Special" on the left side of the choices and choose which item you would like FREE with your order! A portion of the proceeds raised will go to Breath of Hope.  Alexandra, is the Mom of Gabriel, CDH Survivor and is the Consultant for Pampered Chef. Thank you Alexandra for this opportunity!



In partnership with Benefit Wines, Breath of Hope is introducing their new line of charity wines - ABC Cellars - a lineup of six estate grown imported wines. These delectable wines, imported from Lontue Valley, Chile and Catalunya, Spain are highly rated and affordably priced for the wine and charity lover. A significant portion of the purchase price is donated to Breath of Hope to continue charitable efforts! These wines are certified organic and vegan! Plus - Starting November 25th they will be 20% OFF - that is right, all orders will be 20% off from November 25 - December 16th! Here is the LINK to the site: http://www.benefitwines.com/breathofhope_s/303.htm

Through Greatmoods, Breath of Hope has their own site HERE - Gift baskets are a wonderful idea to send to people far away or to give to business associates and friends and family! There are a variety of gift baskets and Breath of Hope receives a portion of the proceeds.


On a budget? Do you search or shop on line and the above items do not appeal to you - or are not on your list to purchase during the season? Good Search or GoodShop for Breath of Hope. GoodShop has thousands of on-line retailers who donate a portion of the sale to charity. Or if you use GoodSearch - each search earns 1 cent or more for charity! 100 searches = $1.00! These add up! Choose Breath of Hope in Charlottesville, VA as your charity and all searches or a portion of your order when you use GoodShop will go to Breath of Hope. It costs nothing! You can even download their tool bar to place on your browser and never have to worry about going to the site again!

You can also donate to Breath of Hope in someone's honor or memory as a gift, you can mail your checks to Breath of Hope, PO Box 6627, Charlottesville VA  22906 or you can visit our website to make a donation on line.  We will send the person or family you donate in honor or memory - an acknowledgement letter and certificate.

Please feel free to share this information with friends and family!  If these items do not meet your needs for gift giving, they may fill someone else you know!

As always - thank you for your support!

Sunday, November 13, 2011

‘Tis the Season – RSV, Flu and other to avoid

Parents of children who survive congenital diaphragmatic hernias usually go into hibernation during this season.  They are vigilant in hand washing, using hand sanitizers and advocating that no one come near their child(ren) with a cold.  (They don’t care if it is “allergies” – a sniffle to you may put a child with compromised lung issues into the hospital.)  This posting just isn’t for families with CDH survivors but also anyone out there who has compromised immunities or even those out there that are called “germ phoebes” by some and ridiculed for this. 

If there is a way to prevent your child or family member from catching the flu, say having the flu shot, will you then do this?  Well, there is a way to cut down the spread of germs and some virus simply by keeping hands clean and not going out into the public when you are symptomatic.  Now, many times most bacteria and virus’ are more contagious prior to the onset of symptoms but there is no reason to purposely expose others to illness.  So, any ‘germ phoebe’ should site this very reason for being so vigilant.  As for the statement, “Well, the more they are exposed, they build up immunities.”  Well, if exposed and it kills them, they will never build up immunities!  It just doesn’t make rational sense to anyone dealing with a child or anyone who has a condition that has a weakened ability to fight many illnesses out there.



So we have researched here for Hand Sanitizer Dispensers and their prices – so the ‘germ phoebes’ can truly cause talk among their friends and family!  Why not?  You’re labeled anyway!

Purell® NXTSpace Saver Dispenser - 1000 ml – Price $9.75 (Not Automatic) and their refills are expensive compared to some others listed below.


AvantOriginal Instant Hand Sanitizer, Wall Mount Dispenser - $23.99 – this comes with two 1000 ml. refills – A good buy!  Shipping is about $5 or so!

This is the link where we compared – so if you have other preferences, please feel free to do your own research:  http://www.nextag.com/wall-mount-hand-sanitizer-dispenser/stores-html

We also found these:

 
And you can go to Amazon and search for dispensers – you’re going to shop for the holidays anyway – so why not add to your order?  Click here to see the choices available on Amazon.com.

It appears Amazon may have the best deals overall – if you buy the dispensers they usually offer the refills at a discounted rate! 

We just did a quick search and compare here – so if you find a great buy out there – please feel free to comment to this post with the info to share with other “Germ Phobes”! 

Wednesday, November 9, 2011

2012 Faces of CDH Calendar - Released!

In 2008, the first calendar to feature the faces of congenital diaphragmatic hernia was produced and released and we continue this tradition.  Our first calendar featured the "faces" it Polaroid-type frames, we decided to bring back that feature for 2012.  Each page also has an inspirational quote.





There are also three sizes, Wall Size, Over sized Wall Size and Vertical with a price range on our Breath of Hope Cafe Press Store site of $15.99, $19.99 and $17.99.  If you find or receive Coupon Codes through Cafepress, you must buy the calendars out on the Cafepress Marketplace to use these codes or take advantage of their sale discounts.  Sometimes this will reduce the price to less than what is listed in our Cafepress Store.  Please feel free to take advantage of these sales and coupon codes! 

Breath of Hope only receives $1 commission for each calendar sold, we keep the price down and our commissions down in order to pass the savings on to you all!  Thank you for your continued support and to all the families who shared their amazing and beautiful children - Thank you too!  Theses faces are what make our calendars so beautiful!

Friday, October 21, 2011

Breath of Hope Presents...


Are you a wine lover?  Do you have friends or family who are?  Please consider ours -   we have own unique wine label. Supporters enjoy fine, organic wines while supporting their favorite cause. Cheers!  Click HERE to go to the site and shop!  You can also call 978-297-5477 and if you are having an event and would like to take orders, we can provide information!  Email us at boh@breathofhopeinc.com.

Sunday, September 25, 2011

Laycee Originals

We always tell parents each child who is born with congenital diaphragmatic hernia is different, like a snowflake but they to share several traits - one in particular is they are just inspirational.  Laycee is truly an Original! 



This is from Laycee Originals Facebook Page, there is a link provided at the bottom.

Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.

The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."

Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.

Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 300 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.

Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).

Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul.  


Link to Laycee Originals

Obviously, Laycee is not just "staring at walls" she is making people smile, connecting with them in a way only a heart understands!  Laycee - you are awesome!

You can go to the link above to find out how to order a Laycee Original!

Thursday, September 15, 2011

2012 Faces of CDH Calendar - Photo Request!

Each year we request photos for our Faces of CDH Calendar and we are asking again if you would like to submit photos, please do so by October 15, 2011.  Our calendars feature these amazing children, both Earthy and Heavenly Angels.  Each month also has an inspirational quote.

Please submit your photos to pictures@cdhawareness.org

These calendars make wonderful gifts for under $25.

Thank you!

Monday, September 12, 2011

Will You Help - Raising a Little CDH Awareness!


Do you see a need in your community to help families who have a CDH child or are expecting a CDH child?  Do you see a need, not being met which we can help you with?  If you do, please contact us at cdhawareness@breathofhopeinc.com.

Here are examples of needs Breath of Hope helps to meet:

Emily, ^Baylee's^ Mommy, will be sending out Birthday Cards to all families of angels on our mailing list!  As many parents of angels know, not everyone remembers their birthdays - it is nice to know we do!


Each year, for the last four years, we have participated in the United Way's Day of Caring, we get volunteers to help us assemble 500 infant hand print kits, most which are donated to the University of Virginia Medical Center's NICU.  Every family who has a baby admitted will receive a hand print kit to capture that moment.  (Not just CDH families - but all families there!)


Nationwide and Internationally too - we send Expectant and New Parents a kit with our Medically Reviewed publications, hand print kit, receiving blankets and a NICU Baby Book and we add in ribbons and wristbands.  Vital information is given to an expectant or new parent of a CDH baby.  We also have volunteers all over who provide our publications to hospitals, so they can give them to families expecting or who have a newly born CDH baby.

We always need anyone to write their Governors, Mayors and Congresspeople to request March 31st be Congenital Diaphragmatic Hernia Awareness Day!  This is also a great opportunity to make those aware in your community!  We provide all materials as guidance and if your city, town or state issue Proclamations or Resolutions - you keep the document!  We also encourage you to have events - small are large in your area to bring attention to this often overlooked birth defect.

We will be having the Jazz for Peace Event in Charlottesville, Virginia on March 23, 2012.  This is their 10th Anniversary and will coincide with Breath of Hope's Congenital Diaphragmatic Hernia Awareness Day Campaign which will be into it's 5th year!  We hope to bring more awareness to congenital diaphragmatic hernia, Breath of Hope and Jazz for Peace in the Charlottesville, Virginia community!


SAVE THE DATE - Week of June 18th, 2012 - our 3rd Annual Congenital Diaphragmatic Hernia Summit will be in Denver, Colorado - this will be the first time on the West Coast!  We need volunteers to help if planning to attend!  Our goal is to have more families enroll in CDH Research Studies, learn about the amazing hospitals and their doctors and nurses in that area and also meet with others who share their journey with CDH.  Each year thus far, we have learned of astonishing information from those doing research on congenital diaphragmatic hernia - many times before it is even published to the public! 

Breath of Hope also helps with any Fundraiser to help raise funding for medical research for CDH or which would benefit CDH patients, support for CDH families and help off-set costs of medical expenses for CDH families.

Please contact us at boh@breathofhopeinc.com if you would like to help or you have ideas to help your community!

As always - Thank you!

Tuesday, September 6, 2011

Tummy Tunnels - Solution for Tube Fed Kids!

Many times we have parents who wonder what clothing do I get for my infant/toddler, snap bottoms, not easy access to the g-tube or mic buttons for feeding.  Tummy Tunnels offers a solution - check them out and please feel free to pass on to all your friends and contacts with kids this can benefit!  All you need is an iron and scissors!

Here is their link:  Tummy Tunnels

Friday, September 2, 2011

Blooms For Hope Fundraiser

Labor day weekend is the end of summer and start of fall for most of us.  We start thinking of the cool crisp days of autumn and the holidays that follow.  We know in February, everyone hopes for an early spring.  Through Flower Power Fundraising Inc - if you place orders for your Spring Blooms - 50% of the proceeds will be given to Breath of Hope.  With each order they also are sending 10 Tete-a-Tete Daffodils.  Fall bulbs are very easy to plant and enjoy in the Spring - it just requires a bit of patience over the winter months.  Blooms for Hope Link (Click Here)

Saturday, August 27, 2011

Announcing - Baylee's Birthday Blessings

SPECIAL ANNOUNCEMENT

We have a new Program at Breath of Hope - Baylee's Birthday Blessings

Emily, Baylee's Mommy will be sending out Birthday Cards to all of our families of angels.  We never want any of our families to feel like no one remembers.  If you are a parent of an angel and on our mailing list, you will receive a card for their birthday.  (Please make sure we have an updated address.) 

If you would like to be on this list, please feel free to email us at boh@breathofhopeinc.com and put in the subject line - Baylee's Birthday Blessings.

Thank you Emily!  (And thank the little spirit behind this too - Baylee!)

Wednesday, August 17, 2011

Blackcreek Mercantile & Trading Company Donating a Portion of Profits to Breath of Hope




The wonderful folks at Blackcreek Mercantile & Trading Company are donating a portion of their profits for their small products, such as the above pictured cutting board and oil to Breath of Hope through January 1, 2012. 

I ordered a cutting board and oil.  I adore the cutting board!  It is made lovingly with one solid piece of wood, smooth so when I cut my parsley (picture above) for my famous meatballs, it was a dream to cut them!  No edges on this board to contend with and it is a perfect size!  These are perfect unique gifts for anyone you know!  This board will be something you pass down in your family for generations!

Thank you Blackcreek Mercantile & Trading Company!

Sunday, August 14, 2011

The President of the United States: Pass a Resolution for March 31st to be CDH Awareness Day

For the last 5 years we have diligently promoted Congenital Diaphragmatic Hernia Awareness Day - March 31st.  In it's inception, we never expected the overwhelming response we received from parents, family and those who truly knew how devastating CDH is on the family who helped to support our endeavor.  Our ultimate goal has been to have one day dedicated to Congenital Diaphragmatic Hernia Awareness, to raise awareness, funds for support and to honor those who continue the fight and remember those brave souls who fought a great fight too.

We realize that each year, writing your Governor and your Mayors for your areas to Proclaim March 31st as Congenital Diaphragmatic Hernia Awareness Day is consistently a constant task.  We also know that sometimes in one state, another new family will step up and this gives them the opportunity to receive the Proclamation and the amazing feeling they have when they hold that amazing document!  There is a sense of empowerment and achievement!  All we ask for is a photo of the document - you keep it! 

We also are going to push forward, we want the President of the United States to sign a Perpetual Resolution, we want all of Congress both the US Senate and the House of Representatives to pass the resolution to make March 31st that day.  A day we reflect, remember, rejoice, celebrate and make all aware of the amazing families affected by CDH.

We have again created a new Petition which will send an email to your Representatives in Congress and to the President to make this day happen.  We are seeking at least 5,000 signatures.  We are asking anyone who would like to push this further and personally call their Representatives to contact us for the sample letter and sample Resolution.  We also ask anyone who would like to turn their State Turquoise for CDH Awareness Day 2012, to contact us for a Sample Letter and Sample Proclamation to contact us too.  Making it personal does help further this cause!

Please feel free to go to this link here at Change.org and sign and you can contact us at cdhawareness@breathofhopeinc.com to get the sample documents.

Thank you for all you do everyday to help educate the public, further awareness of this birth defect.  We still have a long way to go but we are making progress!

Sunday, August 7, 2011

Have You Had to Explain CDH to a Health Professional?

We are requesting any family member or caregiver who has had to explain congenital diaphragmatic hernia to a health professional, to please contact us at boh@breathofhopeinc.com with your "testimonial".  We are working on grants and intend to use these testimonials to show that not only the general public needs to be made aware of CDH but health professionals too.
It is shocking for parents to take their CDH survivor to an ER and have to explain their child's health history, this could be a matter of life or death.  It is unnerving that some parents have had to explain CDH to an ultrasound tech or an OB doctor.  This needs to change.  It could be a matter of life or death.

If you have such an experience, please contact us so we can make this change!

Thank you!

Sunday, July 10, 2011

What to Expect After Bringing a CDH Baby Home - the Basics

The following is from Breath of Hope's Bringing Home a CDH Baby and is based on the American Acadamy of Pediatrics Postdischarge Follow-up of Infants with Congenital Diaphragmatic Hernia.  We also caution parents, all of these children are different and each one brings their own unique situation to the management of their care.  This is a generalization, but as with all the books and publications out there, it should act as a guide and as information, not as an individual assessment.

The most common issue these babies may have is gastresophageal reflux/foregut dysmotility – it is reported to occur in 45% to 90% of infants with CDH.  Reflux can be treated with medications, and many parents also use some sort of angle bed – raised head after and during the feeds.  As these babies grow, they can outgrow reflux.  But, if it becomes severe, a surgical procedure called fundolopation may be necessary.  This is being done less today than ten years ago due to the advancement of medications.

A high percentage of these children are underweight – in one clinical study over 50% of CDH infants weighed below the 25th percentile.  The most important thing for these babies is to have the nutrition they need for growth – they may need NG Tubes or Gtubes for feeding.  Please do not take this personally; we all want oral feeding to happen, but you must remember that it is most important that they grow and thrive as much as possible.  Eating could be a challenge.  Fighting your infant to take a bottle or nurse to the point that it compromises their growth is not worth the stress.  It is more important for your love and cuddling to be felt than for them to feed orally from their parent.  If your child is a great oral feeder, that is wonderful.  Growth helps these babies and their lungs.  Always remember that reflux could cause your child to refuse to eat, too.  At high school graduation, no one speaks of how much or how their child ate as an infant or a toddler.
Upper gastrointestinal study, pH probe and/or gastric scintiscan should be considered for all CDH Infants before discharge and at 1-3 months after birth if symptoms, 4-6 months after birth if symptoms, at 9-12 months after birth to be considered for all patients, 15-18 months if symptoms, and annually through age 16 if symptoms.
Esophagoscopy should be considered if there are symptoms at 1-3 months after birth, 4-6 months after birth, at 9-12 months after birth if symptoms or if there are abnormal gastrointestinal evaluations, at 15-18 months after birth, and annually through 16 years if symptoms.
Oral Feeding Evaluations should occur before discharge, 1-3 months after birth, 4-6 months after birth, 9-12 months after birth, 15-18 months after birth, and annually until age five.
Hearing Loss can be a concern and should be evaluated in these infants who survive CDH.  It can occur even if they were not treated with ECMO.  The cause remains for the most part unknown.  It could be several factors including the treatment for respiratory failure and/or combination of medications they may have taken.  Almost half of these infants may have some degree of hearing loss.  They should be evaluated before discharge and every six months to age three, then annually to age five.  Early discovery of any hearing loss will allow early intervention which will help their development.
Developmental Screening Evaluations should occur before discharge, then 1-3 months after birth, 4-6 after birth, 9-12 months after birth, 15-18 months after birth, and then annually to age 5 depending upon their assessments. 
Pulmonary function testing should be at 4-6 months after birth if indicated, 15-18 months after birth if indicated, and annually through age 16.
RSV prophylaxis immunizations should be done prior to discharge throughout RSV season during the first 2 years after birth (if evidence of chronic lung disease).
During cold, flu and RSV season, many parents isolate their CDH babies and young children from the general public as well as anyone who may have a virus, cold, or bacterial infection.  Hand sanitizer will become a staple in your household.  Others may be critical of you as a parent because you will appear to be overly cautious about your child’s exposure to any cold symptom.  But, parents of these children will tell you it is better to be overly cautious and appear rude to some than to rush your child to the hospital ER in respiratory distress.  A simple cold in CDH babies and young children may develop into pneumonia.  Their lungs are already fragile.  For a baby without CDH, pneumonia is serious, but for a CDH baby, it can be deadly.

Scoliosis and chest wall deformity screening (physical exam, chest radiograph, and/or computed tomography of the chest) should be in follow-up care at 9-12 months after birth (or sooner if you notice something abnormal) and annually to age 16.  When the diaphragm forms in development, so does the spine.  It is believed that scoliosis may occur in approximately 17-27% of CDH survivors.  It is important to follow up with their care and early intervention is best.
Most parents of CDH infants and children fear reherniation, and it has been reported in 8% to 50% of patients with CDH.  One predictor is a large defect that requires a patch to repair.  If your infant or young child has increased reflux activity, decreased feeding, increased gagging, or you hear crackling noise in their chest as they breathe – take them to the doctor.  These are just a few symptoms that have been reported prior to diagnosis of recurrent diaphragmatic hernias.  Monitor and record any changes to relay to the doctor(s).  If you truly feel something is not right, insist upon x-rays for your peace of mind.  Occasionally there are children who have no symptoms who will require surgery for a recurrent diaphragmatic hernia.  The lifetime risk of recurrence is not known.  There are many children who have never had an incident, but it best to be overly prepared with information.
Bowel obstructions or adhesions are also something that happen in these children and usually are rapidly symptomatic.  The explanation of this is that their intestines are usually herniated.  When the initial repair is done, they are pushed back to the lower thorax.  In this process and through growth, sometimes problems occur.  Be aware of any intense pain your child might have in their stomach area.  If accompanied with fever, no bowel movement, or blood in the stool, immediately get them medical attention.
Pectus excavatum – sunken appearance of the sternum can be prevalent in CDH children.  Most of the time it is more cosmetic but in some cases the heart is displaced.  The Mital valve prolapse could be present and there is a decrease in lung capacity.  Surgery might be recommended.
Psychological Issues


Parents have reported that many of their children have sensory issues.  They may not like their hands or feet being held – for fear that an IV will be coming next.  They associate someone holding their hand or foot with pain to come soon.  They may have issues with certain fabrics or textures and touching them.  Some have reported to have mild to very severe oral aversions.  Sometimes it is anything in their mouths, and sometimes it is just certain textures.  There are many therapists now that specialize in children who have had medical issues and the stress they feel after. 
If your child has had multiple surgeries and procedures, this could be a huge issue.  Age has a whole lot to do with their reactions, but there are things you can do to help your child.  One mother trached a Teddy Bear for her son and gave him a toy medical kit to help him.  You can also request that any IVs or surgical procedures be done in another room, not their hospital room if they are older.  This way they can feel “safe” in their hospital room.  Never feel that you should be quiet or that you don’t know your child.  If you feel you should say something – SAY IT.  You know your child better than anyone.  Remind health professionals that yes, your child is their patient but your child is your baby – always.  There is a connection between parents and children that the best health care professionals know could help them in the care for their patient.

There are also parents who obtain copies of their child’s medical records.  We would recommend not only to have the hard (paper) copies but to also save them on a CD.  There are some parents who even provide copies of these CDs to any new doctors that might come into their child’s life.  It saves time and also a parent giving the entire history.  Not all hospitals are on-line with one another nor or all doctor’s offices and until they are parents must be the source.  This is one idea which could make life easier.
Therapies  All children who spend any amount of time in the NICU should also be evaluated prior to discharge and shortlysee if they qualify to receive or may need any sort of physical thereapy.  Do not be disappointed if your child needs some sort of follow-up and therapy, by getting these services for them early, many times it improves their lives, yours too and avoids or prevents serious issues in the future. 

A Humorous but Very Real Warning - CDH survivors are the most defiant, determined and embody the strongest wills as individuals.  As parents, you may be at your wits ends during the terrible twos, troublesome threes, and beyond. Enjoy it, that is what gets these children through life! 
Breath of Hope, Inc. ©

Tuesday, June 14, 2011

Post Traumatic Stress Disorder - NICU Parents

"Experience of a threatening situation that goes beyond the bounds of the individual coping strategies and is accompanied by a sense of helplessness and defenseless abandonment." - Yehuda, 2002

During the Congenital Diaphragmatic Hernia Summit in Philadelphia last June, one of our presentations touched on the simple fact that many parents of children who spend time in the NICU experience Post Traumatic Stress Disorder.  The extent of their PTSD depends on the person, their experiences in life, if they have had depression or any other issues prior and also sometimes the length of time.

Sometimes just discussing this with others who understand helps.  Many times, months later, friends or family are expecting you to "get over" your experience, but this isn't the case.  It is ingrained in your memory, your thoughts and is part of your child's life.  It doesn't matter if your child survived or not, it is the fact that you survived and coped. 

Here are several articles on the subject:

For Parents on NICU, Trauma May Last by Laurie Tarkin NY Times, August 24, 2009

Acute Stress Disorder Among Parents of Infants in the Neonatal Intensive Care Nursery © 2006 Academy of Psychosomatic Medicine

Parents of NICU Babies Often Experience PTSD - KSMU, Jennifer Moore, May 7, 2010

There are three groups of symtom criteria reqired to assign the diagnoses of PTSD:

  1. Recurrences - re-experiencing the trauma (for example, reoccurring nightmares, flashbacks or something that triggers the traumatic event).
  2. Avoidance - to the point of having a phobia places, people and experiences that remind the sufferer of the event or a general numbing of emotional responses.
  3. Chronic physical signs of hyper arousal, including sleep problems, irritability, anger, poor concentration, blackouts, difficulty remembering things, trouble concentrating, increased tendency and reaction to being startled, hyper vigilance (excessive watchfulness) to threat.
Parents of NICU infants have described nightmares, a smell that will take them back to a moment or even hearing something such as a computer beep that reminds them of the machines in the NICU.  These little things can and do take parents back to the NICU.  Some parents avoid the hospital their child was treated, even going out of their way in driving patterns if it is on the route they are taking.  Many times, because family and friends believe we should be "over it" they numb their emotions to the point they do not have a reaction at all, in an attempt to conform. 

We can't count how many parents after their child has been diagnosed, suffer sleeplessness, nightmares, sometimes lashing out for no reason to their partners or others.  They all have a hard time concentrating on items due to the simple fact their child's life was in flux.  To see your child hooked up to monitors and machines is traumatic.  The NICU is a war zone, where there could be death at every turn.  The lows are of the lowest lows and occasionally the highs are very high and there is no middle ground.

How do these families cope?  Sometimes by joining support groups, talking to friends who will listen and understand and occasionally seeking the help of a therapist. 

"The healthy and strong individual is the one who asks for help when he needs it. Whether he's got an abscess on his knee or in his soul." ~Rona Barrett

Thursday, April 28, 2011

Jaxson's Jog in Pennsylvania

Jaxson's Jog is 10K, 5K Run plus a 2.5 Mile Walk in Support of Children with Congenital Diaphragmatic Hernia (CDH).  Your registration makes a difference!  All proceeds benefit Global CDH.
2011 Race News:
  • 2011 race date: Saturday, May 28
    Race day
    registration: 8 am - 9:15 am
    Race starts at 9:30 am
  • 2011 race location:  North Park Boat House, Allison Park, PA 15101
  • We are working on some new and exciting race day activities - stay tuned!
  • Interested in sponsoring the 2011 race?  Email sarah@jaxsonsjog.com
Follow Jaxson's Jog on Facebook:  facebook.com/jaxsonsjog


There are several available sponsorships available. Our sponsorship goal is $2000. If just 20 businesses donated $100 we would meet our goal! Let us share the benefits with you today! email sarah@jaxsonsjog.com for more information. Website: http://www.jaxsonsjog.com
 

Rounds for Ryann - Golf Tournament in Illinois

Rounds4Ryann is June 4th at iron horse golf course in Tuscola!!!! Email ryannscdhhope@yahoo.com for registration details!! 1 tee time, lunch, and dinner, and lots of great auction items this year!! They also need hole sponsors!!  $100 for sponsorship of a hole!  
All proceeds go to St. Louis Children's Hospital DHREAMS program, research for Congenital Diaphragmatic Hernia.

Saturday, April 2, 2011

For A Breath of Hope - CDH Awareness

Today, there was a very special event in Virginia.  Emma above was born, undiagnosed with CDH on March 31, 2010.  Her family paid it forward by having a wonderful event to help benefit Breath of Hope and so we can further help support families and support research efforts for CDH.  Click here for the link to the article that ran in The News-Gazette Paper.  The reporter, Claudia Schwab was at the event today taking notes - so there may be a follow up article!  Thank you to this amazing family. 

This picture is of the CHOP SDU decked out in their Turquoise - and from what we have heard - all CDH babies received onsies in the same style!  (Thank you Dr. Hedrick!)  

And here is Saint Louis Fetal Care staff in their turquoise on March 31st too!





This was just an awesome picture shared!


This is Emma making sure the Proclamation from Beuna Vista is correct!  So serious!


If you have pictures of you in turquoise - you would like to share - please feel free to contact us!  We love this.  We sincerely hope the hospitals out there promoting CDH Awareness Day received significant donations for their research.  That is the result we hope Congenital Diaphragmatic Hernia Awareness Day would have - to bring dollars to research to find answers - and to give hope!

Tuesday, March 29, 2011

Turning Heartbreak Into Action

Kathleen and James were expecting twin girls and one had congenital diaphragmatic hernia.  They relocated to have the twins at The Children's Hospital of Philadelphia.  Unfortunately, Allisyn Grace chose wings instead of feet.  This hasn't stopped her parents to take action and educate others and now fundraise to further medical research for the hospital that tried to save Allisyn Grace's life. 

The Texas Roadhouse in Logan, Utah between 4 PM - 10 PM will be helping, please consider going there if you are in the area on Thursday, March 31st.  Click here to read more.

Wednesday, March 16, 2011

Turquoise Spread to the White House

On March 15, 2011 one of our amazing Turquoise Warriors had her "wish" from Make A Wish Foundation granted.  Most 4 year olds would request a trip to Disney, meeting Dora the Explorer or even today, Hanna Montanna not this amazing girl.  She wished to meet President Barack Obama.  

Her mother reported the day was better than expected.  They were able to bowl a frame at the White House Bowling Alley, Kennedy got to play with Bo, the Presidential Dog and  she entertained the Secret Service!  When she met the  President, she gave him a hug and some Turquoise to wear.  President Obama put on one of our wristbands we sent to this amazing family.  

We know the President was probably very aware of congenital diaphragmatic hernia, thanks to all the efforts from families and individuals out there making requests of their states and localities to issue Proclamations and Resolutions for March 31st to be CDH Awareness Day for now 4 years in a row and Senate Resolution 204 passed without amendment.

Congenital Diaphragmatic Hernia Awareness Day is bi-partisan - please do not think this little girl's wish, or this posting is nothing more than celebrating further awareness of this devastating birth defect.  Each effort, no matter how big or small is important.  

As one of our parents said, "If you're cool enough to be wearing a Breath of Hope turquoise band...you're cool enough to hang with the President of the USA! He's sporting his NOW!! How exciting for the CDH world!!!"  

Or just maybe he is cool enough to hang with all of us!




Tuesday, March 1, 2011

In Dire Circumstances, An Extraordinary Option - UofM 2,000th ECMO Patient

Breath of Hope received this email this morning.  We are honored and will keep Victor, his family and as always these amazing health professionals in our thoughts and prayers!

- Breath of Hope

Good morning!


I am attaching a press release we sent out today about little patient Victor Bryan, of Saginaw, Mich. He was born in November with a severe CDH. He was our 2,000th patient to be treated with ECMO. His mom wanted to make sure we sent you the press release as she is a big fan of your site.

Please let us know if we can provide you with anything else in case you'd like to feature his story on your website or share it with your readers and supporters.

Thank you!
Margarita


Margarita Bauza Wagerson
Senior Public Relations Representative
C.S. Mott Children's Hospital & Von Voigtlander Women's Hospital
University of Michigan Health System
734-764-2220 (o)
313-520-2109 (c)
mbauza@umich.edu
http://www.med.umich.edu/


The University of Michigan Health System is celebrating a special milestone. In November, a twin boy named Victor was born with a congenital diaphragmatic hernia, a life-threatening complication. Victor, of Saginaw, became the 2,000th patient treated at the University of Michigan Health System with life-saving technology known as ECMO. ECMO was developed in the 1970s by a U-M surgeon named Robert Bartlett. It has saved more than 30,000 lives world wide. Read more below for Victor's story and to learn more about ECMO.

Thank you for considering for your coverage today.

Here is Victor's story:
http://www.uofmhealth.org/News/ECMO+2000th+patient


Video:
http://www.youtube.com/watch?v=2LLPHZsntPw


Photo slide show:
http://www.flickr.com/photos/umhealthsystem/sets/72157626167021782/show/


For Immediate Release – March 1, 2011

In dire circumstances, an extraordinary option

ECMO team treats its 2,000th patient, a twin boy born with a congenital diaphragmatic hernia

ANN ARBOR, Mich. -- Valerie Munguia-Bryan and Mario Bryan knew for months that one of their twin babies would be born with a devastating congenital defect. But they refused to give up hope.

The couple was referred to the U-M Health System by their hometown physician in Saginaw because of U-M’s expertise in repairing difficult congenital defects and for heart-lung support technology known as Extracorporeal Membrane Oxygenation, or ECMO, which is used to care for


desperately ill patients. Doctors expected the couple’s baby would need to be placed on ECMO to be kept alive from birth and through surgery.

ECMO was developed in the 1970s by U-M surgeon Robert Bartlett, now a professor emeritus. The technology - described by some of Bartletts colleagues as ‘extraordinary’ -- does the work of a patient’s failing heart and lungs for a period of weeks, sometimes months. That’s often long enough for the heart and lungs to rest and recover, increasing the patient’s chance of survival.

The technology has spread worldwide, with more than 40,000 cases treated and more than 24,000 lives saved. ECMO also has the extraordinary legacy of diminishing mortality in conditions where patients used to have no chance of survival.

Manuel and Victor Bryan were born Nov. 1, 2010 at U-M’s C. S. Mott Children’s Hospital. Manuel was born healthy.

As expected, Victor’s lungs were so underdeveloped that he was placed on ECMO immediately following birth. The following day, he was taken to surgery to repair his prenatally diagnosed congenital diaphragmatic hernia - to fashion a new diaphragm and to return his stomach, liver and intestines out of the upper cavity of the chest, where they were pushing up against the heart and lungs. Infants born with a congenital diaphragmatic hernia often have respiratory problems, with the severity varying by case from mild to life-threatening. In Victor’s case, it was life-threatening, so much so that Victor had two runs with ECMO. He is now recovering from a second surgery to close his abdomen.

“He is a fighter,” says his mom Valerie, who chose Victor’s name after her eye was caught by a University of Michigan poster invoking the school’s Hail to the Victors fight song. “He will be Victorious.”

Dr. Ronald Hirschl says that Victor would not be alive today were it not for ECMO technology.

“Victor had almost no diaphragm, he had small lungs, pulmonary hypertension, and blood was not going through his lungs… he needed the ECMO badly,” says Hirschl, M.D., Surgeon-in-Chief and Section Head of Pediatric Surgery at Mott Children’s Hospital and Victor’s surgeon.


“He is a perfect example of a child who wouldn’t be here today were it not for ECMO.

Victor has become a special baby for other reasons. He is the University of Michigan’s 2000th patient to be placed on ECMO.

The milestone is one that was watched closely by the team of doctors, researchers, nurses and administrators who run the ECMO program.

While the numbers worldwide far exceed 2,000, U-M is where the program was anchored, grew, became refined and developed into what it is today. U-M is the place where thousands of doctors and nurses continue to train to bring this technology to their own hospitals. It is at U-M that the


most difficult cases continue to come - not only for U-M’s depth of knowledge in ECMO technology and care of patients, but for life-saving programs that work in conjunction with ECMO, such as Survival Flight, which flies the sickest patients from around the country on


transportable ECMO technology, and the Fetal Diagnosis and Treatment Center, which identifies problems that can be treated from prior to birth and after.

“Victor is a very special baby,” says Bartlett, who retired from clinical practice in 2005 but continues to run the large laboratory where ECMO was developed, now focused on perfecting the technology. “We can’t wait for him to join his brother Manny at home so on.”

Bartlett says the future of ECMO after this 2000th patient milestone is brighter than ever. His lab continues to work on the development of artificial organs and surfaces to replace plastic tubing currently used to eliminate the need for blood thinners, which remains one of the biggest drawbacks of ECMO technology.

That breakthrough is just a few short years away. “We are very close.”

Victor shares a special legacy with the first successful ECMO baby, now an adult woman whose name is Esperanza or Hope in Spanish.

Esperanza’s mom gave birth to her in California 35 years ago. In the country illegally, the frightened mom left her baby orphaned in the California hospital where Bartlett worked at the time. Her life was saved by ECMO. Esperanza was later adopted by a local family. She is now
married with children, living in Missouri.

Hundreds of U-M staff members have worked on the ECMO project for over 30 years. The team has been not-so quietly cheering for Victor as he grows and overcomes hurdles. Nurses readily volunteer to hold his twin brother Manny every time Valerie visits Victor at Mott’s the Neonatal


Intensive Care Unit. They will readily admit they’re in love with the infants.

While Victor still has some hurdles to overcome, Valerie and her family savor the miracle that he is alive today thanks to ECMO technology. Dr. Bartlett who is retired from practice, visits Victor periodically to check on his progress. Valerie couldn't be happier she had a chance to thank Bartlett.

“I just wanted to make sure I could give him a hug - for saving my baby,” says Valerie.

Written by Margarita B. Wagerson


For more information, contact:
Margarita B. Wagerson, mbauza@med.umich.edu or
Mary F. Masson, mfmasson@med.umich.edu
734-764-2220

Wednesday, January 26, 2011

Perfect Time to Request Congenital Diaphragmatic Hernia Awareness Day!

This is the perfect time for those of you who wish, to send in your requests to your State Governor or your Mayor to request March 31, 2011 to be Congenital Diaphragmatic Hernia Awareness Day in your community! 

Most states request they come no earlier than ninety (90) days prior to the date.  If you are interested, please email us at cdhawareness@breathofhopeinc.com - we will send you a Sample Letter, you can edit with your information, sample Proclamations as a guide for your state or city and other documents to help!

You keep the Proclamation - we just ask for a photo!  

Thank you!