“Our Heartbreaking Choices” by Christie Brooks

“Our Heartbreaking Choices”
by Christie Brooks, mom to cherub Madison Brooks

Pregnancies aren’t always perfect. Prenatal testing can reveal life-threatening issues with the baby’s health, which can leave a parent contemplating the unthinkable- ending the pregnancy. Christie Brooks, a CHERUBS member, made the heartbreaking decision to interrupt her pregnancy in 2003 when her baby was diagnosed in utero with a left-sided diaphragmatic hernia. Through online support networks she was able to connect with other mothers who made the same agonizing decision, but for a variety of different anomalies. Together they put their stories in a book and self-published it last October. The book, “Our Heartbreaking Choices,” contains the personal stories of 46 women who interrupted their much-wanted pregnancies for medical reasons. The purpose of the book was to share their stories in the hopes of helping other parents who have undergone a similar loss to feel less alone, less isolated, and less stigmatized.

This book is available on Amazon.com

http://www.amazon.com/Our-Heartbreaking-Choices-Interrupting-Much-Wanted/dp/0595530478

**CHERUBS is not a pro-life or pro-choice organization. Our mission is to help all CDH families and make sure that they have all the information that they need to make informed choices

Cherubs On Their Way

The following babies are expected soon. They have all been diagnosed with Congenital Diaphragmatic Hernia. Please keep them and their families in your prayers.

Jon Lee S. – Due 2009-04-11
Andrew Lee Whitten – Due 2009-04-17
Gabriela Monteiro – Due 2009-05-14
Avery Mae Keirsey – Due 2009-05-15
Giavanna Digregorio – Due 2009-06-12
Baby Clarketimmins – Due 2009-06-15
James Reeve 2009-06-15
Cameron Zane Redmon 2009-06-20
Baby Price – Due 2009-06-21
Eli Camden Harvey – Due 2009-06-24
Baby Slager – Due 200907-02
Gabriella Morgan Groenewald – Due 2009-07-05
Baby Brogden – Due 2009-07-06
Kamryn Hope Studdard – Due 2009-07-08
Jacob Thomas Zimmerman – Due 2009-07-18
Ireland Rose B – Due 2009-08-23
Jonathan Louis Moehl – Due 2009-09-13
Makayla Jackson – Due ???
Amy Marie Meyers – Due ???

**this is only a list of those cherubs whose parents gave us permission to publish their names. There are many more babies on their way and this list does not include all the many, many newborn cherubs already here.

(CDH) Pediatric Surgery Stories from Morgan Stanley Children’s Hospital

Courtesy of Dr. Charles Stolar
Morgan Stanley Children’s Hospital of New York – Presbyterian

Congenital Diaphragmatic Hernia Awareness Trademark – Court Begins

Court starts tomorrow everyone!!!

I’d like to ask you all to please say a prayer that Breath of Hope, Inc will help to resolve this trademark issue peacefully and also I’d like to ask everyone to please use the Congenital Diaphragmatic Hernia Awareness Ribbon in your on-line profiles (Facebook, Myspace, Blogs, etc) tomorrow to show unity against the trademark on Congenital Diaphragmatic Hernia Awareness. Raise a little awareness while trying to save CDH awareness. 🙂

If you need a ribbon you can use any posted here or you can have a personalized one made by sending your cherub’s photo, name and date(s) to ribbons@cherubs-cdh.org

1:00 pm EST tomorrow, February 11, 2009 …. please say prayers for all CDH families that this drama may end.

How else can you help?  Sign the petition and invite family and friends to sign.

http://www.ipetitions.com/petition/cdhawareness

Ask Breath of Hope, Inc and it’s board members why this trademark and attacking other CDH organizations and parents with legal threats is necessary.  Under their “company profile” you can see their current Board of Directors:

Elizabeth Doyle-Propst (CEO, Primary Director) – elizabeth@breathofhopeinc.com
Marsha McInnis (Director) – marsha@breathofhopeinc.com
Rick Bryant (Director) – rick@breathofhopeinc.com
Jennifer Luning (Director) – jennifer@breathofhopeinc.com
Jean Ashner (Director) – jean@breathofhopeinc.com
Holly Centurino (Director) – holly@breathofhopeinc.com

We suggest finding other ways to contact the board (Myspace, Facebook, personal e-mail) as there is no guarantee that their BoH e-mail addresses are real or that mail is not filtered by the CEO.  This has been suggested by former BoH Board Members.  We will not post their private e-mail addresses.

Thank you everyone for your support throughout this ordeal and for all you are doing to help CDH families!!!

(Repost) No One Knows

No One Knows….
by Dawn Williamson

No one knows what it’s like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter – unless they have been there themselves.

No one knows what it’s like to watch your baby struggle to breathe – unless they have been there themselves.

No one knows what it’s like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute – unless they have been there themselves.

No one knows what it’s like to have to leave the pediatric intensive care unit because you’ve been there so long that they kick you out – unless they have been there themselves.

No one knows what it’s like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you – unless they have been there themselves.

No one knows what it’s like to sit in a Care Conference crying for your child’s rights, begging staff to not give up on your baby and send him to a chronic care facility – unless they have been there themselves.

No one knows what it’s like to have to learn how to work life support systems that your child’s very being depends on – a ventilator, an oxygen concentrator, feeding pumps – unless they have been there themselves.

No one knows what it’s like to ask yourself “Why my child?” so many times that even God is tired of hearing it – unless they have been there themselves.

No one knows what it’s like to have to explain over and over and over and over what your child’s medical condition is to family and friends and a society that has never heard of it – unless they have been there themselves.

No one knows what it’s like to struggle with marriage issues because you’re dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land – unless they have been there themselves.

No one knows what it’s like to scream at a nurse that they don’t know what they are doing while suctioning your child’s ET-tube and it’s about to come out and if they don’t step away from his bed you will step in and physically remove them – unless they have been there themselves.

No one knows what it’s like to have to fight to get treatment for a bedsore on your child’s back from being in the same position for 3 weeks – unless they have been there themselves.

No one knows what it’s like to actually loudly cheer for a child to pee – just pee – unless they have been there themselves.

No one knows what it’s like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working – unless they have been there themselves.

No one knows what it’s like to not hold your child until 2 weeks after he was born because he’s hooked up to too many machines keeping him alive – unless they have been there themselves.

No one knows what it’s like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he’s been on in his entire life, or doctors he’s seen – unless they have been there themselves.

No one knows what it’s like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child – unless they have been there themselves.

No one knows what it’s like to put a tube down your child’s nose and into their stomach, or past the stomach – while making sure not to hit the lungs – so that your child can eat formula from a pump – unless they have been there themselves.

No one knows what it’s like to miss a pulse ox when it’s gone because then you can’t sleep because you’re terrified that your child will stop breathing – unless they have been there themselves.

No one knows what it’s like to hook your child’s ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time – unless they have been there themselves.

No one knows what it’s like to call 911 more than you call the pizza delivery place – unless they have been there themselves.

No one knows what it’s like to duck from flying hearing aids because your 2 yr old can’t understand that they aren’t toys and need to stay in his ears – unless they have been there themselves.

No one knows what it’s like to watch “normal” healthy kids and make wishes for your child that you aren’t sure will ever happen, like riding a bike or going to school or playing baseball – unless they have been there themselves.

No one knows what it’s like to have had more rides in ambulances in your life than in taxi cabs – unless they have been there themselves.

No one knows what it’s like to go out in public and have people point and whisper about your baby, because he’s in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox – and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal – unless they have been there themselves.

No one knows what it’s like to go into the ladies room and cry alone because you don’t want your baby to see you crying beside his hospital bed – unless they have been there themselves.

No one knows what it’s like to try to sing songs and read children’s books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don’t know if your child will live through the week because he has a blood infection – again – unless they have been there themselves.

No one knows what it’s like to be told your child’s kidneys are shutting down, oxygen levels are below 50, and he won’t live through the night – but he does – unless they have been there themselves.

No one knows what it’s like to travel with more electric equipment in your car than the FBI – unless they have been there themselves.

No one knows what it’s like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep – unless they have been there themselves.

No one knows what it’s like to hire home health nurses and then have to oversee them and make sure that they aren’t sleeping when your child’s vent pops off his trach at 1 am – unless they have been there themselves.

No one knows what it’s like to jump up and down squealing because your child is walking – at 2 and a half yr old – unless they have been there themselves.

No one knows what it’s like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they “can’t handle all his issues” so you are better off homeschooling – unless they have been there themselves.

No one knows what it’s like to consider moving to another country to get their universal health care because your child doesn’t qualify for any decent insurance with all his pre-existing medical conditions and you can’t afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid – unless they have been there themselves.

No one knows what it’s like to be asked “so what caused him to be sick?” while being looked at like YOU did something to cause it – and have the only answer that anyone has to that question “I DON’T KNOW!” – unless they have been there themselves.

No one knows what it’s like to carry medical records with you every where you go “just in case” – unless they have been there themselves.

No one knows what it’s like to perform CPR on your own child – more than once – unless they have been there themselves.

No one knows what it’s like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons – unless they have been there themselves.

No one knows what it’s like to not be able to go home for Christmas because your child could catch a cold that would kill him – unless they have been there themselves.

No one knows what it’s like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way – unless they have been there themselves.

No one knows what it’s like to try to communicate with a child who can’t talk and struggles with sign language to the point that both of you cry – unless they have been there themselves.

No one knows what it’s like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child – unless they have been there themselves.

No one knows what it’s like to scream down the hospital hallway “Help! My child can’t breathe!” or “Where is my son’s 2:00 meds?” or “He is allergic to that!” – unless they have been there themselves.

No one knows what it’s like to leave the hospital without your baby but with his bed sheets and linens instead because he’s allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him – unless they have been there themselves.

No one knows what it’s like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn’t given fast enough – unless they have been there themselves.

No one knows what it’s like to be in the hospital so much you’re on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew – to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later – unless they have been there themselves.

No one knows what it’s like to be in the hospital so long that when you come home you actually miss the cafeteria food – unless they have been there themselves.

No one knows what it’s like to spend every hour that visiting isn’t permitted in the PICU in the medical library, looking up your child’s birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child’s hospital bed with a medical terminology book translating it all – unless they have been there themselves.

No one knows what it’s like to be told that your child won’t live to be transported to the larger hospital so you should say good-bye – unless they have been there themselves.

No one knows what it’s like to have a surgeon tell you “we’ve done this surgery so many times on him that we aren’t sure how else to go in there” – unless they have been there themselves.

No one knows what it’s like to watch your child’s first haircut being done by a nurse to prep for an IV going into this head instead of at the barber – and still taking photos of it for his baby book – unless they have been there themselves.

No one knows what it’s like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong – unless they have been there themselves.

No one knows what it’s like to be so frustrated with feeding therapy, begging your child to please “take just one bite for Mommy, PLEASE” – unless they have been there themselves.

No one knows what it’s like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever – just for caring – unless they have been there themselves.

No one knows what it’s like to lose your child – unless they have been there themselves.

No one knows what it’s like to lose your child in your own arms, while they look up at you and you try and try to save them but can’t – and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you’re mommy and you’re supposed to do the impossible – unless they have been there themselves.

No one knows what it’s like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him – unless they have been there themselves.

No one knows what it’s like to cry so much your heart feels like it’s coming out of your throat because you miss your baby so much – unless they have been there themselves.

No one knows what it’s like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child’s memory and turning them into a superhero instead of … your baby …. because you want to remember them for who they were and not who you wanted them to be – unless they have been there themselves.

No one knows what it’s like to ask God a different “Why my child?” question millions and millions of times until He cries with you – unless they have been there themselves.

I know, because I have been there. I didn’t read it in a book or in someone else’s story. I didn’t learn about this from an article or research abstract. I don’t pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It’s more than a day or a few weeks in the hospital. It’s more than 1 surgery. It’s every single moment in a cherub’s life. Every single one. I know this because I lived it.

And I know over 2200 other moms who have lived it too. Who understand. Who didn’t learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

Congenital Diaphragmatic Hernia Forums

We have dozens of forums at CHERUBS for CDH families and medical care providers. There are over 2600 registered families and medical care providers, 100’s of topics and over 39,000 posts! You can’t find more CDH information and support than that! 🙂

http://www.cdhsupport.org/members

Only 5% of our forums are public so make sure to sign up to see all the great information and support! Membership is free.

There is an approval process which can take up to 48 hours so make sure to fill out your form thoroughly to speed up the process. All information is 100% confidential and is not given or sold to anyone or any other group or business. We value our members’ privacy and safety, which is why we verify each new member. Information on your membership form is also used for CDH Research so you not only get wonderful information and support but you help CDH research as well!

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Videos of Cherubs – Bennett’s Journey

Congenital Diaphragmatic Hernia Newsletter

We just uploaded the latest issue of CHERUBS newsletter –

http://www.cdhsupport.org/newsletter/Winter09SilverLining.pdf

Update – “Congenital Diaphragmatic Hernia Awareness” Trademark

Update:

On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Diaphragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It was resubmitted without the logo and went onto the Supplemental registry on September 17, 2008. Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening correspondence to other CDH organizations and families who used the term “Congenital Diaphragmatic Hernia Awareness”.

On December 4, 2008, CHERUBS filed a Petition to Cancel with the United States Patent and Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”.

It is our goal, along with 7 other CDH organizations and over 4000 CDH families and medical care providers who signed an on-line petition, that this trademark be canceled so that all people affected by Congenital Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Diaphragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect. Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and persons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH families and to fight for their rights to raise awareness.

It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to cancel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organization for families affected by Congenital Diaphragmatic Hernia.

http://ttabvue.uspto.gov/ttabvue/ttabvue-92050284-CAN-1.pdf

http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2

Petition against the “Congenital Diaphragmatic Hernia Awareness” Trademark is located at http://www.ipetitions.com/petition/cdhawareness/index.html

Finally the government caught up on something CHERUBS has known for years!

S. 1810: Prenatally and Postnatally Diagnosed Conditions Awareness Act

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810

Several years ago CHERUBS started a movement for better ultrasound technology, information for parents diagnosed with a sick child in utero and support referrals. A parent sent me the link above this morning – Congress finally passed this! How wonderful for all CDH families and families of children born with any birth defect or genetic anomaly! Below is one of the logos that we used back in the day when we petitioned for for this act. We set it aside to work on other things, plus it was getting too sticky (public charities cannot lobby Congress). But isn’t it wonderful that it has finally been passed!?

CDH

CDH

Summary from the site:

10/8/2008–Public Law.
Prenatally and Postnatally Diagnosed Conditions Awareness Act –
Section 3 –

Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.
Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.