Zumba Fitness For Congenital Diaphragmatic Hernia Awareness!

Gigi Hill - Fundraiser for Entire Month of June

One of our fantastic Moms is doing a fundraiser for Breath of Hope for the entire month of June.  Fifty percent of all sales will go to Breath of Hope.  Great gifts for women - bridal showers, birthdays or just because - or maybe a new spring bag for yourself!  Please go here to purchase!  If you would like to host a party please feel free to contact Jennifer at jenniferzaranis@gmail.com

Jaxson's Jog - Fundraiser in Pennsylvania for CDH

Jaxson's Jog is a 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.

Summary of Race Details:

• REGISTER online today, click here (note: registration says 1 mile walk, but it is 2 miles)
• Race date: Saturday, May 22, 2010
• Race location:  North Park Boat House, Allison Park, PA 15101
• Race day registration from 7:30 am - 9:30 am
• 10K and 5K Race begins at 10 am; walkers follow
• Registration Fee: $20 for adult runners/walkers, $10 for youth (18 or younger)
• Course Info: For 5K course, click here; for 10K course click here
• Hotel: Holiday Inn Pitt North is offering a special rate of $79 - click here for details
• Stick around for the post-race festivities - awards and Chinese raffle

Follow Jaxson's Jog on Facebook:  facebook.com/jaxsonsjog
To make an online donation to Global CDH in the name of Jaxson's Jog, click here.
There are lots of ways to help – sponsor or make an individual donation, register as an individual or a team to run/walk, or make an in-kind donation of food or gift for the Chinese raffle.   I hope you will strongly consider supporting the families and children with Congenital Diaphragmatic Hernia by participating in Jaxson’s Jog!

Happy Birthday Jaxson!  We hope your day is wonderful!

2010 Congenital Diaphragmatic Hernia Summit

Will be in Philadelphia, Pennsylvania from June 23 - June 27.  For more details please go to this link with the most complete and up-to-date information - LINK

We want to thank Peace Frogs Travel / Outfitters, Chief Frog, Julie Arbelaez for her tremendous help with the hotel rooms, conference rooms and breakfast(s).  If you have travel needs, please consider them - here is the link. http://www.peacefrogstravel.com/

Happy Mother's Day

 

To all mothers - mother's of these amazing children - both the angels and the earthly angels, grandmothers and great-grandmothers out there too!

Being a full-time mother is one of the highest salaried jobs... since the payment is pure love. ~Mildred B. Vermont

Mothers hold their children's hands for a short while, but their hearts forever. ~Author Unknown

Mother love is the fuel that enables a normal human being to do the impossible. ~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

A mother's love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking ~ Helen Rice

A mother is someone who dreams great dreams for you, but then she lets you chase the dreams you have for yourself and loves you just the same. ~ Unknown

The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh

Congenital Diaphragmatic Hernia Summit - Philadelphia, PA

(Organizations in Alphabetical Order – more are welcome!)
Breath of Hope, The Children’s Hospital of Philadelphia, Global CDH,
Parker Reese Foundation, Project Sweet Pea

June 23 -24 2010 – Sheraton Hotel, Philadelphia, PA

To reserve your hotel room at a special rate of $129.00/night ($100 discount)
(Copy and paste the following link into a web browser)
http://www.starwoodmeeting.com/StarGroupsWeb/res?id=1004139524&key=C2

You can also call the Sheraton at 1-888-627-7071, please mention the Breath of Hope Block (50 rooms)

The Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia coordinating Speakers for June 24 and/or 25

Dhreams Research Presentation – Julia Wynn

Presentation by Willie Skaggs, Councilor – How to best deal with friends and Family – who just don’t understand - open session for families to get ideas and strategies

June 23 – would be introductions … The Organizations all represented will have time to do presentations.

June 24 – (currently open)

June 25 – 10 AM – Dhreams – Presentation and description of Genetics and their study. There also will be forms there and possibly a certified phlebotomist to take blood samples for those who would like to participate.

June 26 – Visit to the Philly Zoo - the oldest Zoo in the United States – we are working on a group/discounted rate we will need a RSVP in order to reserve this at discounted rates and a possibility of having access to more attractions – such as a Swan Boat Ride or Pony Rides! boh@breathofhopeinc.com to let us know if you want to attend!

June 27 – The Children's Hospital of Philadelphia's Center for Fetal Diagnosis and Treatment's Fetal Family Reunion - or those traveling and who want to take advantage of the room rates through the Breath of Hope Block – please feel free! We will provide water and drinks through the conference sessions and are hoping to provide breakfast and possibly a dinner or lunch.

Nurses Week - May 6 - 12, 2010

Let nurses know how important they are to us!

Alex had a Lemonade Stand - Breath of Hope wants a Birthday Bash

Spread a little awareness every day and why not have a bake sale?  Or even a cookout and collect donations?  If you work - bring goodies in and accept donations in exchange.  Breath of Hope's Birthday is May 17th - all fundraisers are appreciated and to further this incentive a gift certificate will be awarded to the person who raises the most funding by July 31, 2010.  The proceeds collected - 50% will go to the programs and services Breath of Hope provides and 50% will go towards medical research.  If you have questions, need ideas - please feel free to contact us at cdhawareness@breathofhopeinc.com

WHAT IS IT LIKE TO HAVE A BABY WITH CONGENITAL DIAPHRAGMATIC HERNIA?

Imagine that you and your partner are expecting a baby.  The thrill of the whole thought – another little being.  The whole thing is a bit overwhelming and exciting.  About the time many are diagnosed, is the 20 week ultrasound.  Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born.  Whose mouth and nose does this little one have?  No one expects to be told their child has something wrong. 

You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs.  Then they see that something isn’t right.  It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose.  In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia.  The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues.  They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.

You are then told there are options.  Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one.  It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too.  Your insurance coverage may not cover such a procedure.  It is highly experimental even today.  One day it may not be.  You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too.  They may require ECMO, a heart lung bypass in order to save their lives.  To imagine your unborn child hooked up to a heart lung bypass?  It is overwhelming.  This isn’t supposed to happen.

You will also be given an option to terminate the pregnancy.  You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester.  You are not supposed to be making life and death decisions for your child.  You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father.  Those worries are enough in themselves. 

Now you are given options if you were prediagnosed prior to birth.  You must make these decisions that will not only affect your lives, but your whole family.  You will wonder if your choice of hospitals is good and question if you should go to another.  None of the choices are easy.  You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child.  Many times there are none.  Sometimes there are other issues. 

Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination.  Only other parents who have been there and done that can relate to this.  Many of us were asked, “How can you?”  We just do.  We have truly little choice in the matter. 

If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma.  You wanted this baby and you chose not to have them suffer.  It is not a selfish act but a selfless one.  Some will state if you didn’t go full-term this child doesn’t count – so not true.  You will also change because of this experience. Your child will never know the pain and will always be in your hearts. 

If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure.  If you are the mother, you will have this constant reminder moving and kicking within you.  If you are the father, each time you see your partner, you will have this reminder.  The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.

Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress.  They whisk the baby away and start intubation and assessing the condition of the infant.  You may not hear anything for hours.  Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you.  The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate.  Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment.  You are in shock.  What in the heck is a congenital diaphragmatic hernia?  How did that happen?  Why didn’t they see it before?  When can I see my child?  When can I hold them?  Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.

Both will sit by the bedside and pray, hope and wonder what is next?  You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon.  This isn’t supposed to happen this way!  Why your child?  No one can give answers to that question.  You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour.  Sometimes you cling to just a good minute.

If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth.  This is a slow process.  It takes time and patience.  Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions.  You wonder how you are going to take care of this once fragile infant at home.  You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs.  Your best friend will be anti-bacterial soap and hand sanitizers.  (Next to an abundant supply of burp cloths for the reflux.)

And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do.  That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, “We just knew it was time”.  The most unselfish act in the world is to tell your loved one, “It is okay to go.”  They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase. 

It takes courage, faith, strength you never thought you could have to endure having a child with CDH.  You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before.  You will also know that no matter what life throws at you now, it is small compared to what you have endured.

© Breath of Hope, Inc 2010

Barnes-Jewish, St. Louis Children’s Hospital and Washington University Launch Fetal Care Center to Treat High-Risk Mothers and Infants

See the full article here.