One of the big topics of conversation at the APSA event in correlation with CDH is the huge discrepancy of "facts" posted on the internet. It's a cause of great concern to CHERUBS and many pediatric surgeons - yes, they do read CDH sites and blogs and they keep up with ALL happenings in the CDH world!
There are literally 100's of CDH Blogs and sites on the internet now. The awareness of CDH that they raise is staggering!!! The internet has done so much for CDH awareness and support since the first CDH site (CHERUBS) back in 1997. But with posting CDH information, comes a responsibility.
Many, many CDH parents post just their stories about CDH.... tributes to their sons and daughters. This is wonderful! But please, please post a disclaimer that every CDH child is different. This is so very important for expectant and new CDH parents to know. No 2 CDH patients are alike. They are CDH snowflakes. Whether your child survived or is an angel now... if you post your story, please post that each child is different. It is wonderful and admirable to want to give others hope - but hope without facts is cruel. That is not being negative - that is being honest. Every CDH parent should have all the information and facts needed to make the best decisions for their children.
Another misnomer is the "lung function" fable. Lung function is only a part of the many, many factors that contribute to a child's survival or death at the hands of Congenital Diaphragmatic Hernia. Head to lung ratio is used in research and yes, you'll read a lot of articles about head to lung ratio in correlation with CDH - but anyone who tells you that that is the deciding factor on whether your child survives or not is extremely uneducated about CDH. Any CDH surgeon, researcher or other care giver will tell you that most deaths are due to ECMO complications, sepsis, kidney failure, heart failure and many other factors. The best lung function in the world does not protect against those complications. Proper hand-washing and a sterile environment while in the hospital plays a bigger role in this than lung function. However, lung function does dictate when a child comes off ECMO, ventilators and oxygen. Parents should be aware of ALL facts and pieces of the CDH puzzle.
Another big topic is the survival rate of CDH. Some sites are posting 60% and 70% survival rates and crediting this data to research articles. This is not how survival rates work. Those articles only include the babies that were not miscarried, terminated, stillborn or who died before transport to their hospitals. Often, they do not include the worst cases - which they denied treatment to. Most CDH research studies done by hospitals include only those cases that were admitted to them. This tips the survival scales drasitically. The OVERALL CDH survival rate is still 50%. Those sites posting differently are either very ill-informed or wanting to tip the scales to give hope rather than facts.
Most importantly, get your facts from a reliable source. A CDH reseach center, a CDH researcher or at least someone with a medical degree with experience with CDH. "Research" through Google is not research. Quoting others research is not "research". It's playing with the emotions of CDH parents and it's wrong. Most of the misinformation is coming from 2 or 3 groups... given to parents who then post it and more parents read it and post it and it then becomes CDH propaganda rather than fact. Rather than post misinformation just to be argumentative.... take the time to learn the facts like CHERUBS does. Like most other CDH groups and sites do. Because it's not about who is right - it's about what is right for CDH families.
Where does CHERUBS get our information? We've been researching for 16 years. Not "googling" but actually getting our hands dirty and spending 1000's of hours in medical research libraries. We also have Medical Advisors on our board - including some of the world's top CDH researchers. Not to mention our CDH Research Studies that we started in 1997. We never quote just 1 medical journal article as our end-all, be-all statistics. We never align ourselves with the research of just 1 hospital. We are dedicated to CDH research - to conducting it, advocating for it, participating in it and bringing correct information to CDH families. Our statistics are build on actual research and years of experience, AND correlation with CDH researchers.
Now, I need to say that all the hospitals and sites in ACDHO follow ethics and post full information. All the hospital work hard to give accurate, reliable information and their research efforts are invaluable. All the sites and non-profits in ACDHO abide rules of ethical conduct and do not post false research data or give medical advice to CDH families. If you want data to post on your sites or blogs - please go to them.
To new and expectant CDH families... read, read, read!!! Read as many stories as possible, read as much research as possible, get as many facts as possible. But be very discerning about who and what you believe along this CDH journey. These days, anyone can write a blog, post a story, start a non-profit or through out some statistics. There is so much misinformation out there... take the time to find the right information!
We learned so much at the APSA conference and talking to CDH researchers. CHERUBS has been so concerned about all the misinformation on the web for a few years now. It was disheartening to learn that we are not the only ones very concerned about this. This has become a real problem and it is hurting CDH families.
Let's all work together to give families affected by Congenital Diaphragmatic Hernia the very best information possible. CDH is hard enough, they do not need to wade through misinformation or read 1 or 2 stories and think their stories will be the same. There is no such thing as too much information, research or support!