And so, the Davis family, who graciously share their too-few moments with baby Jacob in this video, accept the time they have and fill it with tenderness and tears. Jacob had been diagnosed with Pallister-Killian syndrome, which is not typically life-threatening (see Simon’s story). But Jacob was also diagnosed with a congenital diaphragmatic hernia, complicating  his prognosis. He was not expected to be with them for long.

A sad pair of studies from the Netherlands turned up with this search last week—a problem that primary doctors can address if they’re aware of it. According to the report below, children and adolescents who survived high-risk congenital diaphragmatic hernia show somewhat reduced lung function, but not enough to cause any physical impairment. Their measures for gas exchange and exercise capacity are normal.

RESULT: Pulmonary function and exercise capacity in survivors of congenital diaphragmatic hernia
European Respiratory Journal | Nov 1, 2009

However, although these children are essentially healthy, they and their parents believe their health is poor and likely to decline, according to another study by the same group. (The researchers did find an increase in attentional and behavioral problems compared with controls.)

RESULT: Psychological outcome and quality of life in children born with congenital diaphragmatic hernia
Archives of Disease in Childhood | Nov 1, 2009

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SEARCH TIP: Query challenge: ADHD famous people

We wondered how the person fared after entering the query ADHD famous people. Answer: not so well: The highlighted words in the blurbs beneath those results include no references to famous people. (Click on the link to see for yourself.)

How would a power SearchMedica user find this information?

•  Un-click “Prioritize results by publication date,” just beneath the yellow Search button. (Because the query has to do with history, it’s a waste of your time to see the results ranked by publication date. Relevance to the search term is all that matters.)

•   Eliminate the word “people” from the query. It’s a red herring, a general term likely to prompt the search engine to include irrelevant results. Using quotation marks (ADHD “famous people”) might help, but that could eliminate articles that use words like “athletes,” “performers,” or even “celebrities.”

The search term ADHD famous includes among the top 10 results one article that mentioned famous individuals thought to have had ADHD: Albert Einstein, Thomas Jefferson, and Thomas Edison.

RESULT: Adults With ADD Getting Long-Overdue Attention
Psychiatric News | May 17, 2002

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OTHER RECENT SEARCHES ON SEARCHMEDICA

Search: hereditary hemorrhagic telangiectasia

Your colleague wrote in to draw our attention to a classic tale of medical hypothesis and trial. In the first article below, Oklahoma City cardiologists present the solid biochemical case for treating hereditary hemorrhagic telangiectasia (HHT), which they call “a disorder of unbalanced angiogenesis,” with the vascular endothelial growth factor (VEGF) inhibitor bevacizumab. The results were impressive and sustained. A few months later, in the second article, several other groups report similar success using the same strategy to treat HHT in individual patients. The treatment is expensive, of course. Are clinical trials next? (Our search shows none yet in planning.)

RESULT: Bevacizumab in Hereditary Hemorrhagic Telangiectasia
New England Journal of Medicine | May 14, 2009

RESULT: More on Bevacizumab in Hereditary Hemorrhagic Telangiectasia
New England Journal of Medicine | Aug 27, 2009

Search: therapeutic diet

This search turned up, among many other interesting results, an article about a consensus report that weighs against trying special diets to treat autism spectrum disorders. But further down the same search page, you’ll find studies on diet and cardiovascular disease, diet and prostate cancer, and diet and kidney disease.

RESULT: Evidence Lacking for Special Diets in Treating ASDs
MedPage Today | Jan 4, 2010

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SEARCH TIP: Get one thing perfectly clear

If the person who typed the query above is doing a research paper about everything known about using diet to treat disease, this was probably a good search.

Otherwise, it’s a good example of a nonspecific search. Adding the condition of interest to the search term would render a much more targeted list of results.

Polka Dot Round Customized Address Stamp

I “met” and became friends with Jes Singletary, founder of The Parker Reese Foundation, through an ad I had placed on a blog.  Her story was and is so moving to me.  Jes lost her beautiful young daughter, Parker Reese, to congenital diaphragmatic hernia at two days old.  She and her husband formed the foundation through their love for their daughter.  The Parker Reese Foundation helps in the fight against this disease by funding medical research, advocating public awareness campaigns and by supporting all who have been affected by the congenital diaphragmatic hernia birth defect.

Sugar and Spice Note Cards

Parker’s House was opened in May 2008 for families delivering babies with congenital diaphragmatic hernia (CDH) or coming back for follow up appointments and/or surgeries at Duke University Medical Center or University of North Carolina – Chapel Hill (UNC).  This house is free of charge to families and provides them the opportunity to stay overnight or for months at a time.  It is a home away from home for them, a place where they and their extended families can stay with absolutely no worries.

"From the Desk Of" Customized Rubber Stamp

For the entire month of July, 10% of proceeds from Purple Lemon Designs will be donated to The Parker Reese Foundation.  Purple Lemon Designs features custom rubber stamps and printable stationery. 

Customized Etsy Shop Stationery

Downtown Clock - Corinth, MS

I hope that you will check out Purple Lemon Designs and help in supporting The Parker Reese Foundation.

Website: http://www.purplelemondesigns.com       

Blog: http://www.purplelemondesigns.com/blog

E-Mail: Kelly@purplelemondesigns.com

Don’t want to know the details or drama of what’s going on?

Don’t want to hear about other problems when you have enough of your own dealing with your CDH baby or grief?

Don’t care about lawsuits, threats, perjury, audits, blah, blah, blah….?

You just want to raise as much CDH Awareness as possible?!!!

That’s ok!!!!!!! In fact, that’s GREAT!!!!!

That means that you will want to be a part of May 17th since it’s for ALL organizations and CDH families and you truly want to just raise awareness!!!!!!

http://cdhsupport.org/awareness/cdhday.php

It’s not about one group, one person or even raising money. It’s about raising CDH awareness!!! It’s about saying a prayer (or making a wish) for the end of CDH. Because that’s the goal, isn’t it?

* You don’t have to go anywhere *
* You don’t have to spend any money *

Just say a prayer (or making a wish) for the end of CDH and tell at least 1 person about CDH. That’s it! How easy is that? (You can do more if you wish – visit the link for details!)

No drama. ALL organizations can participate! No trademarks. No one has to ask permission to join in. No one has to pay anyone for anything. Use the ribbon as much as you want. Sell it on anything you want for any group you want – we don’t care!!! Just raise CDH awareness!!

Too many babies are dying from CDH. Too many families are devastated. Drama and politics and money should not be stopping awareness if that’s what’s needed to help these children!

So how can you possibly say no?

I hope to see everyone participating in this amazing day for these babies!!!!!

Please join the event and invite your family and friends!!!!

http://cdhsupport.org/awareness/cdhday.php

May 17th is almost here! This day is set aside to say a prayer (or make a wish) for the end of Congenital Diaphragmatic Hernia. CDH is a devastating birth defect that has struck more than half a million babies since 2000. That’s a baby every 6 minutes diagnosed with CDH! 50% of these babies do not survive and the cause is not known. More awareness and research is desperately needed!!!!

On May 17th please take a moment to say a prayer (or make a wish) that the cause and prevention of CDH is found. There is power in prayer (and wishes)! And please tell at least 1 person about CDH to educate them about this birth defect. Just 1 person (or more!).

How else can you help?

Ask your church or other group to include info about CDH in their programs for that day. Attend an event. Wear a CDH ribbon, wear a shirt or other logo item. Hand out buttons. Release balloons. Send info to your family and friends. Post on your blogs and web sites. Post on your Facebook or Myspace account. Get more friends to join this event!

————————–————————–————

Event information, 5 CDH funds, new stories of cherubs, Adopt A Hospital and much, much more!!!

http://www.cdhsupport.org/newsletter/Sp09SilverLining.pdf

CDH Family Assistance Fund – A majority of this fund will go to help families with travel expenses such as airline tickets and gas. It will not go to lodging because CHERUBS highly recommends the *free* lodging available at Ronald McDonald Houses. Families will submit confidential applications to assistance and a committee will consider each request.

Our goal is to make sure that all CDH families can afford to get to their cherub’s medical center and have a place to stay so that they can concentrate on their children instead of travel worries. We hope to assist a family through this fund by this fall.

The remaining small percentage of this fund will go to Gabe’s Gifts, a new program that helps new and expectant families by supplying them with items needed. This project will start by September, 2009!

• $20 can cover 1 gift bag for a CDH family from Gabe’s Gifts
  
• $20 can cover 1 family’s gas for a day
  
• $50 will cover a gas card for a family going back and forth to the hospital
  
• $500 can cover a plane ticket for 1 family member

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs’ ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.

Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

http://www.firstgiving.com/cdhfamilyassistancefund

CDH Research Fund – to pay for the $1000 a year cost of research database hosting and to raise money for research organizations such as the International CDH Study Group – unless a request is made to go a specific hospital. The CDH Study Group is a collective group of over 30 hospitals around the world specializing in CDH research. We chose to support groups like this one because we know that every cent will go directly to research on Congenital Diaphragmatic Hernia and research will be brooder and more advanced when collaborating with dozens of hospitals and researchers together.

CDH Research Site – funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers – offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $1000 per year (thanks to a grant from QuestionPro). Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $1000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.

www.cdhresearch.org

This web site is a project of CHERUBS – The Association of Congenital DIaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH. CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatement of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, of all races, religious backgrounds, and financial status – no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year – in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it’s almost as common as Spina Bifida (7 in 10,000) – yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

We hope to award our first scholarship in 2010.

An application form will be posted soon.

http://www.cdhsupport.org/donate/scholarshipfund.php

• A donation of $7 will sponsor 1 CDH Education Poster
  
• A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons
• A donation of $100 will sponsor a Balloon Release
• A donation of $400 will sponsor 5000 CDH Awareness Brochures
• A donation of $3000 will sponsor a billboard advertisement

• $1 will cover 1 2-pocket folder
• $1 will cover 1 copy of our Parent Reference Guide
• $5 will cover 1 newsletter printing and US postage
• $10 will cover 1 New Member Packet
• $50 will cover our annual non-profit state registration fee
• $50 will cover envelope costs for 1 year
• $50 will cover our volunteer software for 1 month
• $100 will cover staples, paper clips, glue, etc for 1 year
• $100 will sponsor 1 hospital with CDH info for 1 year
• $125 will cover web site hosting fees for 1 month
• $300 will cover 1 local get-together
• $400 will cover printing 5000 brochures
• $500 will cover outside programming fees
• $2000 will cover non-newsletter postage fees for 1 year
• $3000 will cover 1 newsletter printing and mailing
• $5000 will cover 1 international member conference

Rene Couret is a plus-size model, actress, entrepreneur and student, currently residing in Southern California. She is studying Musical Theatre and American Sign Language. In her spare time, Rene runs several websites including a CDH birthing options activism site. She also loves giving advice on vegetarian healing diets, whole food nutrition, and self-image issues. Rene has appeared in the movie “Phat Girlz”, appeared in many stage productions and is very involved in Hollywood’s “Love Your Body Day”.

Rene’s son ,Gregory Zion Couret ,was born August 3, 2004 with a Morgagni (or right-sided) Congenital Diaphragmatic Hernia. When Gregory died at six months of age, it was a bittersweet experience. Rene felt it was her greatest source of pain but he was also her greatest source of inspiration.

When Gregory was born he was rushed right away to the NICU. He had a right-sided hernia, which causes more trouble due to the liver piercing into the right lung and pushing over the heart. He was only breathing about 30% on his own and he needed the assistance of a Ventilator in order to keep him alive. He was placed on ECMO for one week and had emergency surgery to fix his diaphragm after a small brain bleed. He had six surgeries and was taken off and on breathing support more than ten times. In the end his lungs just could not handle anymore and his heart gave up on him. My son was supposed to come home right around Thanksgiving in 2004, but he got an infection and had to heal all over again. My family and I prayed hard, stayed up nights visiting him, and had as much faith as we possibly could. He went through ups and downs and fought his best, but by the time he was six months old he passed away. After my Gregory passed away, I felt as if something was wrong with me and I thought I did something wrong. Maybe I could have done more, or maybe it was karma sneaking up to bite me. I went through many ups and downs in my mind before I could just accept what happened and move on. It is still a process and two years later I have days when the thoughts cripple me and there are times where I feel that it never even happened.

Wendy is a celebrity local to the Raleigh – Durham, NC area. I personally met Wendy a few years ago at Duke Gardens and subsequently helped to photograph her wedding (I was a photography assistant at the time). Last year we were looking for volunteers for our Angel Ball and Wendy responded to our ad. She not only volunteered for our Angel Ball but our Golf Tournament as well and is now a celebrity spokesperson for CHERUBS! And if that wasn’t wonderful enough, Wendy, who is also Mrs. Durham County, NC is now using CDH as her pageant platform! We can say we met Wendy at the very beginning of our celebrity career on her way to the top – and on the way to the top Wendy is definitely going!

Some of Wendy’s career achievements so far; Film appearances in “Racing Dreams”; “Absence With Pictures” and “April Fools Day”. She was in Chris Daughtry’s music video “Home”. She has appeared on television on the shows “One Tree Hill”, “Paris Hilton’s BFF” and “Whittaker Bay”. She’s also done quite a bit of local commercials and promotions including playing Diamond Barbie. She is currently on the Nascar circuit as an Ask.com spokesperson. She is Mrs. Capitol City 2008 and Mrs. Durham County 2008 and has represented North Carolina and local towns in the Mrs. NC America 2007, Mrs. North Carolina America 2007, Mrs. Granville County 2007 pageants and was a Miss Hawaiian Tropic Final.. With a huge heart, Wendy is very active with many local charities, including Duke’s Children’s Classic.. Wendy will be at our 2009 Angel Ball!

To learn more about Wendy you can visit her site at http://www.wendypetty.com

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

**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

Our Web Site – more information about CDH than anywhere on the net with 1000′s of pages! http://www.cdhsupport.org

All About CDH – information, diagrams, videos and more. http://www.cdhsupport.org/cdh/index.php

CDH Forums for Families – over 100 posts each day, 100′s of topics. Get advice, help, info and support 24/7 from parents who have been in your shoes. Membership is FREE and it is all confidential. http://www.cdhsupport.org/members

CDH Parent Reference Guide – simple, easy to understand information on CDH written for parents whose babies were newly diagnosed. http://cdhsupport.org/members/dload.php?action=file&file_id=32

CDH Brochure - in 4 different languages http://cdhsupport.org/members/dload.php?action=category&cat_id=10

CDH Research – research library, survey results and coming very, very soon an interactive CDH research survey for parents and researchers http://www.cdhresearch.org

Newsletters full of stories, news and much more -http://cdhsupport.org/newsletter/

International CDH Conference – members from several organizations and CDH researchers coming together http://www.cdhconference.org

Congenital Diaphragmatic Hernia Day – May 17, 2009 http://cdhsupport.org/members/portal.php?topic_id=3012

CDH Events - tons and tons of events and get-togethers and fundraisers around the world http://cdhsupport.org/members/viewforum.php?f=184

State & International Representatives – find local support. http://www.cdhsupport.org/volunteers/reps.php

On-Call Parents – need to talk to someone? They are on-call for you. http://www.cdhsupport.org/volunteers/oncall.php

Videos of Cherubs – dozens of videos of cherubs, events, and more. http://www.youtube.com/user/cdhsupport

CDH Photo Albums - 100′s of photos of children and adults born with CDH http://cdhsupport.org/members/album.php

CHERUBS Adopt A Hospital Program – help us to help families around the world by adopting a hospital to provide materials to for new CDH families http://cdhsupport.org/members/portal.php?topic_id=3013

Our Blog – http://cdhsupport.blogspot.com

Free On-Line Albums for CDH Families – http://cdhsupport.org/members/album_personal_index.php

Free Blogs for CDH Families – keep your family and friends updated with these free blogs on our CDH informational site so they can also research! http://cdhsupport.org/members/weblogs.php

CDH Blog Ring – group of CDH blogs written by parents http://www.ringsworld.com/cdhblogsring/home.html#2

CDH Awareness Ticker – drop by and see how many babies have been born with CDH since 2000 as a new baby is diagnosed every 6 minutes somewhere in the world. http://cdhsupport.blogspot.com/2009/04/over-half-million-babies-born-with.html

Research Library – add your links or view the links of others to CDH research articles and sites. http://cdhsupport.org/members/links.php

Personalized CDH Awareness Ribbon - Order a personalized ribbon with your cherub’s name, date(s) and photo – send them to ribbons@cherubs-cdh.org

“Stories of Cherubs” Vol. I & II - full of stories of 100′s of families who have dealt with CDH http://www.cafepress.com/cherubs/6191951

CDH Calender – featuring 100′s of faces of children born with CDH http://www.cafepress.com/cherubs.337095355

Congenital Diaphragmatic Hernia Awareness Items – including Clothes, Bibs, Maternity Shirts, Totes, Journals, Posters, Hats, and much, much, much more – http://www.cafepress.com/cherubs

CDH Awareness Ribbon Car Magnets – http://www.supportourribbons.com/m/160153 Also available in a larger size

CDH Awareness Ribbon Buttons – just 18 cents each!!!! http://cdhsupport.org/members/viewtopic.php?t=3001

CDH Awareness Bracelets – pink, blue and yellow silicone bracelets that say “CDH Awareness” http://cdhsupport.org/members/viewtopic.php?t=2436&start=165

CDH Awareness Postage Stamps – http://www.zazzle.com/cherubs

CDH Awareness Mailing Labels – download and print for free! http://cdhsupport.org/members/dload.php?action=category&cat_id=17

Random Acts of Kindness CDH Awareness Cards – there is no nicer way to raise awareness! http://cdhsupport.org/members/dload.php?action=file&file_id=85

CHERUBS Facebook Group – talk to other CDH parents on Facebook http://apps.facebook.com/causes/44070/11273893?m=6d54c0aa

CHERUBS Myspace Page – talk to other CDH parents on Myspace http://www.myspace.com/diaphragmatichernia

More Downloadable Info – info on where donations go, our non-profit paperwork, older newsletters, event brochures and more! http://cdhsupport.org/members/dload.php

This is just a small list of what we offer and doesn’t even include most of our awareness activities and projects. Drop on by our site and take a look at how CHERUBS has been helping families deal with Congenital Diaphragmatic Hernia for 14 years.

Virginia “Addison” Acord
Layla Mae Burket
Caleb Ray Cox
Grayton Karleigh Creekbaum
Hannah Alysabeth D.
Ava Rose Daher
Nicholas Robert Doades
Jack Arthur Dowling
Connie Katherine Evans
Kaden Michael Ferguson
Kaitlynn Rene Foret
Brandon Christian Frush
Gwendolynn Leigh Glover
Callie Grace Gould
Anika Faith Guertin
Celeste M Hall
Jessica Howell
Ryan Heustess Inman
Kaden Alex Kuehl
Kaylie Kathryn Marczak
Jacob Travis Meyerson
Maxwell Christopher Mocahbee
Audrey Aileen Monreal
Jacob Alexander Morrison
Jack Joseph Nelson
Emadeane Rose Owen
Corben Hudson Blake Paone
Jadyn Ryanne Paxton
Vito Robert Pensavecchia
Devin Scott Person
Brandon Daniel Peterson
Bryan Taylor Piazza
Kayla Nicole Rubio
Isaac James Santimaw
Anthony Bryce Smith
Dylan Joel Smith
Marley Jane Steingass
Nicholas Walter Treska

**this is only a list of those cherubs whose parents gave us permission to publish their names. It also includes cherubs whose parents just joined our organization in the last 4 months.

Please help us to raise Congenital Diaphragmatic Hernia Awareness and Research so that someday soon no more babies will be lost to CDH.