I am on the road for 3 months attending conferences. I am speaking at a dozen, I am keynote speaker at 2. I am also touring children’s hospitals and meeting with our Medical Advisors. It’s been an extremely busy summer so far and there’s a lot to announce.
My internet in most places has been awful as I travel. I try to keep up with our cherubs when I can. Answering e-mails has proven difficult as some places I stay have no internet and I have to hope the wind blows cell service the right way. I have to say it’s been peaceful not being here on Facebook so much the past few months, well much of the last year as my role has changed at the charity. I love keeping up with the kids but I hate social media drama. My time is better spent working for our kids.
I logged in this morning via Wifi in a barber shop in a small village in Greece. There’s a goat tied up outside. I’m shaking my head at how crazy life has become. I am here on a rare few days off to relax between conferences. Tomorrow I am in Rome to visit Bambino Gesu hospital and to meet with 2 doctors we work with.
As I logged in, my LinkedIn lit up. Apparently a year ago yesterday my job title changed from President of CHERUBS to President of CDH International.
1 year. WE have done all this in 1 year.
I wish I could share all that is going on behind the scenes. Soon.
The biggest thing is that we are now involved in CDH Research in many other countries and working with other charities and hospitals to push for better research and care for ALL our children.
To do this, we MUST have a standard measurement of mortality and morbidity in Congenital Diaphragmatic Hernia. This is the only way to get accurate information, push real research and save lives.
Currently, most hospitals have their own ways to measure. They count and don’t count children in their statuistics based on marketing and not true comparable figures. After all, in the United States medicine is a business. More patients = more $$$$. So prospective patients are told whatever the hospital admins or doctors feel is accurate acording to their own budgets and personal morality. Medicine in the US is capitalistic. So if you only count the kids who arrive to your hospital alive, with only CDH, liver down, an Apgar that’s above 0, full term, who didn’t get a single infection in the hospital…. of course survival rate is high.
The survival rate for CDH overall is still 50%.
You can only compare survival rates if every hospital is using the same measurement. .
Let me repeat.
You can only compare survival rates if every hospital is using the same measurement.
Anything else is marketing. Any honest surgeon would agree.
Ask any surgeon outside the United States and they will agree.
So what do we do about it?
The CDH Study Group is trying to set a Standard of Care in the United States. We fully support that and all the work by the CDHSG. Many hospitals and surgeons are on board with this idea. The hold up is those hospitals and surgeons who don’t want to report true survival rates via standard measurement and lose patients and money. I’m just being bluntly honest here. It’s common knowledge that there is an ugly business side of medicine in the US. Who are those hospitals? I won’t name them but if you ask your surgeon and he gets angry at the question or gives excuses why it shouldn’t be done… there you go. As all the surgeons who want to make this happen will tell you… there is no ethical ground to stand on to NOT want to set this standard measurement. Not change care, not decrease care…. just unify how data is reported to get accurate statistics.
Our CDH Accredidtation will only accredite those hospitals who honor a standard of measurement. Otherwise, it would be a discredit to patients and families to accredit based on marketing and not real data.
As for setting a Standard of Care…. we cannot hope to do this until there is a Standard of Measurement of the Mortality and Morbidity of CDH. So that is our current focus with the Accreditation.
After 25 years, the CDHSG is now finally trying to set the Standard of Care in the United States and they should be the ones to do so. The surgeons groups in Canada, Europe and Japan have already done so. There is quite a precedent now. We will push them until it’s done. I’m sick of losing any children, much less to things that can be easily prevented like RSV. Or watch parents go bankrupt because insurance won’t pay because there’s no standard of care. The only way this will happen is if parents push for it. Demand it. Like many other causes before us. Like 100 rare diseases before us have done. Our children deserve better.
We are still pushing with accreditation. Patients deserve better care. Hospitals who report honest numbers, collaberate in research and work to help end CDH on a global front should be recognized.
Accreditation is solely voluntary with an application that goes live before the end of the month. Applications will be peer reviewd by other doctors – not myself or other employees or parents.
We already have hospitals calling our office impatient to apply for Accreditation.
I have also been working hard as I attend medical conferences to build up Accreditation committees. We have over 3000 doctors in our network now. Yes, you read that correctly.
We have joined several surgeons groups also. I am now a member of ELSO (ECMO accrediation group). I am a part of the Global Pediatric Surgical group. I am speaking at surgeons conferences on 4 continents this year. I am involved in 2 NIH committees. I also am heavily involved in the Rare Disease community.
ACDHO is hard working on a Charter this summer. Because families deserve to have a drama free, supportive CDH community and all charities and social media groups should be held accountable to professional and uplifting and legal. This charter is being written by the leaders of several CDH charities.
CDH International will announce our first 2 CDH Charity Accreditations next week. I am slow in posting that due to internet issues. My apologies to those 2 charities as you deserve to be recognized for all your hard work to build the community up.
We have added several more Medical Advisory Board members and Executive Directors in the past year. 2 more will be announced shortly. We also are hiring another employee to keep up with all the many projects and demands. We are growing very fast.
There is much more news. Much, much bigger news coming down the pipeline. Just because I am quiet here on Facebook, it doesn’t mean that we are all not very hard at work for CDH patients and families.
One year… but built on a foundation of over 20 years. WE did this. Together. We are making a huge different in the fight against Congenital Diaphragmatic Hernia for every child, every family, every hospital and in every country. Because every single patient deserves to be saved.
I want to say a huge thank you to all 3 of our Boards for working so very hard. The Board of Directors, the Parent Advisory Board, the Medical Advisory Board….. right now the best, most active, most forward thinking Boards we have ever had. So honored to work with these amazing people, including CDH experts from around the world To Rachael and Jason and all of our employees, past and present over the year as we transitioned from CHERUBS to CDHi. Our dear volunteers who work tirelessly behind the scenes despite taking care of their families, other jobs and life. This is not a 1 or 5 or 25 person show here. At all.
To Tracy Meats…. who has taken over the role as President of CHERUBS with drive, strength and leadership skills to help families and keep them safe in our groups, boards, sites. She’s leading our Parent Advisory Board and our volunteers and doing a tremendous job. We truly picked the right person and I am so grateful to her for stepping in to allow us to grow.
Also, our deep appreciation of the grant supporting my travel to push all this research and the accreditation and the foundation who believed in us to make it all happen. The donors and fundraisers who continue to support our families and research projects. All the many, many doctors and nurses who encourage us every single day to continue pushing and making this happen.
And all of you. Our members, our families, our friends, our local business people…. for supporting this crazy idea the past year. It worked. We did it. We are doing it. WE have given all these kids and their families real hope.
Your continued support, prayers, kind words, donations and connections greatly appreciated in the next year as we start to implement so much of the work we have been doing for the past year.
“A global initiative to end Congenital Diaphragmatic Hernia”
-Dawn Ireland, President of CDHi
