Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Thursday, June 26, 2008

Breath of Hope is Now A Carepages Affiliate

Breath of Hope, Inc. Helps Patients, Families and Friends Stay Connected with New Services facilitates communications and emotional support that studies show contribute to better patient experiences and outcomes

Charlottesville, Virginia -- Breath of Hope, Inc. now offers patients, their families and friends free access to, healthcare’s largest social network to provide the emotional support needed for healing and well-being. enables those involved in a health event to create private, Web sites for sharing health updates, photos and supportive messages. also has resources to help people cope with the emotional challenges of a health event, including inspiring stories, tools to meet others in similar situations, and practical tips and advice on “what to do” and “what to say” during difficult and stressful situations.

With this new service, Breath of Hope, Inc. is in the forefront of a growing trend among public charities that support families and friends to improve the overall patient experience by recognizing and meeting their emotional needs. A recent survey of nearly 900 caregivers and visitors to patient CarePages found that more than 92% said they would like to see healthcare providers be more proactive in providing emotional support.

In addition, several clinical studies have concluded that emotional support can have a positive effect on the healing process. For example, an article in the Joint Commission Journal on Quality and Safety (December 2003), reported that emotional well-being has been shown to be predictive of survival and functional independence among older patients.

“CarePages helps Breath of Hope, Inc. move forward on one of our key priorities—increasing patient well-being and overall patient and family satisfaction,” said Elizabeth Doyle-Propst, CEO “It’s very easy to use, since we’ve integrated with our own Web site and other services.”

“Breath of Hope, Inc. recognizes that communication and personal interactions can transform health events into more positive experiences for all participants,” said Eric Langshur, CEO, CarePages, Inc. “CarePages has helped millions of patients connect on a deeper level with their families, friends and other caregivers, and we are proud to welcome Breath of Hope, Inc. into the CarePages community.”

In addition to giving patients and families emotional support, makes it easy for patients and families to recognize Breath of Hope, Inc members who have provided superior levels of care. The service also gives them the opportunity to support Breath of Hope, Inc. is secure and compliant with all HIPAA requirements. It ensures that patients, families and healthcare providers are protected online through strict privacy policies, password-protection and visitor management tools for CarePage Managers.

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About CarePages, Inc. is the first site dedicated solely to helping people cope with the emotional difficulties caused by a health event. Millions of members have used its free, patient-centric Web pages to communicate and connect with each other, plus its unique resources to guide them through the experience. In addition, customized CarePages are offered by nearly 700 U.S. and Canadian healthcare facilities. CarePages, Inc. is part of Revolution Health Group LLC, whose goal is to help consumers make informed choices and put them in control of their health decisions through the cornerstone of its efforts – Together, these services address both the emotional and informational health care needs of its members. For more information, please visit

Monday, June 16, 2008

Congenital Diaphragmatic Hernia Rare? Or Not?

I was astounded earlier this month when I was watching our local CMC Telethon to raise funds for the local Children's Medical Center. I wasn't in awe of the funds raised - something hit me hard. They featured a baby who was still in the NICU there but on his way home and he was recovering from a congenital diaphragmatic hernia. Now that wasn't what hit me. I know that there are at least 20 in the city I live who have had children with CDH. I know that we have members of the Breath of Hope Yahoo Group that live in the same town, some within driving distance of one another for a "normal commute".

What struck me was they referred to the congenital diaphragmatic hernia birth defect as "rare". Rare? I don't think so.

In March 2007, Stacy and I researched the statistics out there and we wrote the following which is copyrighted material:

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 – 3,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics) this translates to approximately 1800 live births of the congenital diaphragmatic hernia birth defect per year. Cystic fibrosis, which occurs in 1 in 3,000 live births in the United States and spina bifida, which has an occurrence of 7 in 10,000 or 1 in 1478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida although congenital diaphragmatic hernia occurs just as often, with fatal results.
[© 2007-2008]

In 1999, when I was pregnant with my daughter the statistics for CDH stated it occurs 1 - 3,500 - 5,000. Has the occurrence increased? The birth rate really hasn't but the occurrence of CDH in pregnancies appears to have increased. Yet, we have broadcasts (granted the media) stating that congenital diaphragmatic hernia is "rare".

The survival rates of infants born with congenital diaphragmatic hernia is still generally the same too - 50% - and this is what may make it rare - that there are half the children who have had this birth defect each year surviving and growing up into our society. This is what makes it rare - the survival rates!

In almost ten years - the survival rates even with the gentle vent technique and various drugs that are now approved to use for these infants to overcome Pulmonary Hypertension. This must change. There is research looking at genes of the parents, child and siblings. There needs to be more research in developing treatments so that more and more of these children survive. Further this more research to develop plans to help these children who might have reflux, failure to thrive, eating issues, scoliosis and chronic lung issues.

It is not a rare birth defect. It is a rarely survived birth defect - based solely upon the numbers of approximately 900 each year.