Congenital Diaphragmatic Hernia Research Bill

Posted on CHERUBS blog, reposting here and hoping my family and friends will write in memory of Shane!

CHERUBS is very proud to present our Congenital Diaphragmatic Hernia Research Bill to be presented to Congress to help promote more federal funding for CDH research.   With the help of our members, other CDH organizations and the public, we are determined to promote CDH Research to help save the lives of babies born with Congenital Diaphragmatic Hernia.

We are currently searching for bill sponsorship.  If you would like to contact your Congressman or Senator and ask for their support of this bill, please visit http://www.cdhbills.org for more information.


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In request of a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research

Submitted by CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
3650 Rogers Rd. #290
Wake Forest, NC 27587
919-610-0129
research@cdhsupport.org



A BILL

To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,


SECTION 1. SHORT TITLE.

This Act may be cited as the ‘CDH Research Act of 2010’.


SECTION 2. FINDINGS.


The Congress finds as follows:

(1) Congenital Diaphragmatic Hernia is a birth defect.

(2) Congenital Diaphragmatic Hernia has a rate of occurrence of 1 in every 2500 babies.

(3) Congenital Diaphragmatic Hernia affects approximately 1600 babies each year in the United States.

(4) Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.

(5) The majority of Congenital Diaphragmatic Hernia patients have underdeveloped lungs and/or poor pulmonary function.

(6) Congenital Diaphragmatic Hernia patients often endure long-term complications such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders and developmental delays.

(7) Congenital Diaphragmatic Hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition and hypoxic brain injury.

(8) Congenital Diaphragmatic Hernia has a survival rate of 50%.

(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 2000.

(10) Babies born with Congenital Diaphragmatic Hernia endure extended hospital stays in intensive care with multiple surgeries. Extended hospital stays in some cases have exceeded one year.

(11) Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis.

(12) Congenital Diaphragmatic Hernia is diagnosed in utero in only 75% of cases.

(13) Congenital Diaphragmatic Hernia is treated through mechanical ventilation, heart and lung bypass (Extracorporeal Membrane Oxygenation) machines and surgical repair.

(14) Congenital Diaphragmatic Hernia surgical repair is often outgrown thus leading to reherniation and requiring additional surgery.

(15) Congenital Diaphragmatic Hernia does not discriminate based on race, gender, religion, economic status or lack of prenatal care.

(16) The cause of Congenital Diaphragmatic Hernia is unknown.

(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.

(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.

(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.

(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.


SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.


(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.

(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—

(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.

(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.

(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.

(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.


SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.


(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia

(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—

(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;

(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and

(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

March of Dimes March for Babies Walk, Seeing an old friend and Mother's Day

Mother's Day weekend.... ugh.   I hate this holiday.   Don't get me wrong, I love my own mom to pieces and she should absolutely be honored on Sunday, as should my mother-in-law and all moms.  But for a grieving mom, it's a hard day.  It hurts.  A lot.   I literally would give my life for a card with Shane's handprints on it or a paper cup full of daisies from him.  Or now that he'd be 17, I guess a regular card and a hug from him would be more than enough.  But he's not here.   I don't get any more Mother's Days with him.   I know I should be grateful for the ones I did have... but I'm greedy.  I want my little boy here.   I do have good memories of Mother's Day mornings with my ex-husband making me breakfast in bed and Shane toddling into the bedroom behind him and leaning on the bed.  Cards from him, gifts from him (ok so his dad picked them out, but it still counts).   My first Mother's Day gift of a Precious Moments figurine still means the world to me as it sits on a shelf in my office.   I am blessed, I know that.  I am grateful.   But I just really miss Shane right now.  That doesn't mean that I'm not completely in love with my other two sons.  I am, and I am so so blessed to have them in my life and to have the opportunity to be a step-mom.  

It's been crazy busy around here.   CHERUBS is going non-stop with some pretty amazing things going on.   REALLY amazing stuff going on!   And I'm working on my regular job up to 50 hours a week right now.   Plus the boys on 2 baseball teams.  I am literally running on Mountain Dew lately.   But it's all GOOD stuff!  :)

2 weeks ago my hubby, boys and I participated in the March for Babies.   We walked in memory of Shane and in honor of B (Craniosynostois and Preemie) and G (Preemie).    It's rare that I get to do something for all 3 of my boys at once!!!!   Love all 4 of my guys!!!  :)    B even came in 3rd place in the race and G in 4th place!

One of my friends pointed out that Shane's photo (on my shirt) in this photo was "Shane between his 2 brothers".  Yeah, that had the waterworks starting!  LOL

I got to meet Erin finally too!  She walked in the march with us.  She lost Zoe not too long ago to CDH too.  Erin and I have become good friends and I think the world of her and Zoe holds a piece of my heart too.   I get to hang out with Erin some more next week and am really looking forward to it!

And a few weeks ago I got to spend the weekend with one of my BFF's (yes, I said BFF!), Brenda.   That's here in the jeans below.  She's annoyingly gorgeous.  ;)  Brenda and I have been friends for 15 years and she's more like a sister than a friend to me.  Through it all... having Shane, losing Shane, divorce, CHERUBS stuff, losing Debra, miscarriages, etc.... she's been there.   Brenda lost 2 babies to CDH.  I met her a year after she lost Amanda and while she was still pregnant with Nicholas.  She's the 3rd member of CHERUBS.   After 1 phone call, we became friends for love.   Love you very much, Bren!   I never would've made it through the last 11 years without you!

Yes, a lot of my friends have dealt with CDH too... that's how we became friends.  What better friends than those who understand because they've walked in the same shoes?   And so many knew Shane.... not many people really did when we were so isolated for so many years because of his medical issues.  So those that knew him and loved him too.... how can I not feel like they are my family?

Happy Mother's Day to ALL moms this Sunday!!!!!   Whether your children are here or they have wings.  Motherhood doesn't end, ever.   Being a mom is the most wonderful job in the world.  Being a grieving mom (or dad) is the hardest job in the world.  But we're still moms.  

Easter

Easter is a very special day to me. I'm a Christian and I am so eternally grateful to God for giving his Son to us and to Jesus for dying for us to erase our sins.

In a way, it helps to know that Mary understands what it's like to grieve for a son. Even God wasn't spared from the worst tragedy a human can go through.... watching your child die.

Thank you, Jesus, for giving me the chance to see my son again some day! For molding me like clay to be a better person and to continue to teach me and love me every day.

And thank you, God, for 6 and a half years with my beautiful little boy and having 6 opportunities to share Easter with him. That was such a gift, we are so blessed. Thank you.

1993 at Duke

And thank you Lord for my new family, for an incredibly supportive husband and 2 beautiful sons.  This is actually my first Easter with B & G.   This is only the second year we've been married and last year they were at their mom's.   So I'm VERY excited to be able to do the mom thing this year at Easter as it's the first time 10 years I've been able to that.  

Thank you God for all 3 of my wonderful, beautiful, amazing sons.

New CDH Song Video!

Shane is in this... it's a video featuring over 700 CDH patients and it was created to raise Congenital Diaphragmatic Hernia Awareness.   The song is by The Jammies and iTunes proceeds are being donated to CHERUBS.  It was written by a CDH dad is just beautiful!  Get your tissues ready... you'll need them watching this!!!  :)

Feel free to repost this video anywhere to raise awareness!!!

Making My Son Proud & Doing Right By CDH Babies Everywhere

My son's blog isn't a place for drama but this is too big to not share....

On Friday, our trademark lawyers forwarded us the official letter sent to the United States Patent & Trademark Office stating that the other party is going to relinquish rights to the phrase "Congenital Diaphragmatic Hernia Awareness" that they tried to trademark.

3 years of drama, over 6000 signatures, lawyers, courts, and getting blasted by a few brainwashed people for daring to stand up to this trademark.  Not to mention all the personal attacks on me, my family and my charity and standing up to that.  Is over. Finally, it's over!!!!!   We WON the fight against this trademark and never again can 1 woman try to shut down our charity, sue me, attack me or other families by threatening, suing or harrassing with that trademark.  After so many years of that... it's such a HUGE relief to have it finally over.   There is still a trademark on "Congenital Diaphragmatic Hernia Awareness Day" and God knows the drama would start up again if we tried to use that phrase... so we don't... we raise awareness every day.

It hasn't been an easy journey at all. But we did it!!!!!    1000's of CDH families have backed us, plus other charities and over 100 researchers in fighting against this trademark.   So many families are celebrating now!!!   CDH Awareness if finally FREE again and not only that, but we have set a precedent that no other cause will ever have to endure what we have!!!

There were moments when I wanted to give up.  But I didn't and I am proud of myself for that.  Every once in a while life throws tests at you... do you take the easy road and sell out and give up your integrity?  Or do you stand your ground and hold on to your compassion and honor and knowing what's right?  We held on.  We stood our ground.  We passed the moral test and did what was right.   Doing the happy dance on that one!!!!  :)

This post is written to CELEBRATE and to MOVE ON....

I was made aware of CDH on January 28, 1993... long before someone else felt the need to claim the phrase their "intellectual property".   If it would take CDH out of my life and give me my son back, she can have it.  I hope someday she finds peace and stops targeting her anger at me and hurting 1000's of others along the way.   I don't even hold any anger toward her... I forgive her.  I pray for her.  She must be in awful, horrible pain to do all this stuff.  As a fellow grieving mom... I understand the pain.  Not the lashing out at others, but I do understand the pain... and as a Christian and for my own peace of mind also... I do forgive.   And I hope we can move on.

Now hopefully we can all put this behind us and move on and focus on doing good, positive things for the CDH communities and these families.

We did it....  and I know I made my son proud.   That makes my heart swell and makes it all worth it.  :)

It's time to move forward...

The Great Human Race - March 27, 2010

My amazingly supportive hubby and I participated in the Durham "Great Human Race" this weekend, representing CHERUBS and walking in memory of Shane.

What a beautiful day to raise Congenital Diaphragmatic Hernia Awareness!   We raised money and had a lot of fun walking with the other families that really mean a lot to me.  We talked so much that we lagged behind and Craig and I are officially the LAST people to cross the finish line!  LOL   Oh well, I never planned on running the 5k.  :)

We wore shirts with Shane's ribbon on them.  We have a section on our Cafepress shop for parents to order items with the CDH Awareness Ribbon and their child's photo.  This is Shane's section -

It has a ton of great stuff on it!

Happy 17th Birthday, Shane!

As I write this I think about where I was exactly 17 years ago today... in labor and delivery, about to give birth with the hour.  And still as naive and innocent to all the bad things that can happen.   I don't even remember that girl I used to be before Shane and CDH.

It's been a rough day.  I miss him.  I'm trying to stay busy on CHERUBS stuff, I'm up to my ears in sites and projects and Congressional bills and tons and tons of really great stuff.   But I can't focus.   I miss my son.

 

These are some photos of B & G volunteering in memory of Shane.  We're putting together Adopt A Hospital Kits and CDH HOPE Totebags for CHERUBS.  This is my office.  It's a mess, as usual.  But we accomplish a lot and help a lot of CDH families so it's worth it.   Don't I have the best sons in the world?  All 3 of them.   I love you B & G and Shane, with all my heart.

A lot has been going on with CHERUBS... all good stuff.   We have had our share of drama the past few years - which I won't post about because this blog is about my son, not drama.   But dealing with the drama... dealing with a few women who would love nothing more than to shut down CHERUBS and punish me for the horrible sin of not wanting their nonsense in our charity... that is about Shane.   Because to me, that's like hurting my son.  I started CHERUBS not for my son but I did start it because of him.   Without Shane I never would've heard of CDH.   I've given over 25,000 hours of my life to volunteer in his honor and in his memory.   My heart and soul and all the love I have for my son are wrapped up in this charity.   So I feel like a lioness protecting my son's memory.   I just wish people would leave CHERUBS and him and me alone.  

(**** Interjected update - 6:53 pm 1/28/10 - I was writing all this this evening, before this post even went live... this blog page was being stalked and then posted on Facebook by these same women.  On his birthday.  This is the type of stuff I deal with and it's so wrong.   This is my son's memorial blog for Christ's sake*****).  

CHERUBS is a good thing - it has helped 1000's of people (including them).    I know God led me to start this charity, I know my son is proud of me, I know there are babies still here because of the information or support their parents received.   That's all that matters.   That's what I answer to God for.  That's what life is all about... and sometimes death too.   Taking the worst and making something good out of it.   So I continue to run CHERUBS, keep fighting for it, keep fighting CDH... so that someday no more parents have to let balloons go to remember their children instead of watching them open birthday presents.

Shane's been gone 10 years now... I don't miss him any less.   I can still hear him, smell him... as if he was just here.   I feel guilty complaining about how much I miss him when I know how blessed I was to have had him for 6 and a half years.    I don't know if that makes missing him harder or easier.    I just know that I miss him still and my heart is still broken.

After 10 years... people forget.   Friends and family think you've "moved on".   If I have 1 piece of advice for those of you reading this that are trying to help someone through grief...   we ALWAYS miss them.   Birthdays, holidays, angelversaries are HARD.  But my CHERUBS family... always remember.   I have had over 100 e-mails, facebook notes, forum private messages and calls today...  wishing Shane a Happy Birthday or just to tell me they were thinking of him and me today.    If every CDH parent has that much support - I've done my job well.   What an amazing, amazing group of friends I have.   God bless them for remembering my little boy today.

Not to forget my mom... a saint on earth and grieving mother herself.  She never forgets her grandson, ever.  She understands.  I can call her and cry and not say a word and she understands.   She's there if I need to talk, if I hear need to hear someone talk about my son, if I need a hug... I love my Mommy.

Craig let balloons go with me today (thank you, honey).  We were planning on going to VA to the cemetary this weekend but the weather is not cooperating.   My parents are expecting 8 inches of snow, we're expecting a few inches of snow and ice here in NC.   I'm a little upset that we can't go... I treasure my alone time at the cemetary with Shane.  Being almost 3 hours away, I don't get to visit him often.    And I was looking forward to getting that "family photo" with all 3 of my boys too.   But you know the old saying... we make plans and God laughs.

Shane's birthday balloons, flying to the moon.   Watching them float away today I wished so badly I could go buy a couple dozen of them, hold them up and fly up to him Mary Poppins style.   Just fly away to my son and hand him his birthday balloons.   I miss him so much.

This is a graphic I made for CHERUBS a few weeks ago. It represents all the babies lost to Congenital Diaphragmatic Hernia and brings awareness to the cause.    Did you know that over 600,000 babies have been born with CDH since 2000?   Over 300,000 of them did not survive.   My son is a statistic, a victim of CDH.  I hate CDH.

Oh Shane, Mommy loves you and misses you so much!!!!!!    17... how could you be 17?????    You're still 6 and a half to me.... running your match box cars on the floor, blowing raspberries.   Tipping your glasses up on your nose.   Playing with your hearing aids.  Twirling your Mic-Key button.  Laughing.   I miss you.   Happy Birthday, baby!!!!     Dear God, hold my little boy tight today and please let him know how much I love him.