(reposted from 1/ 10)
CHERUBS is almost 15 yrs old. 15 years old in February. Wow! We have achieved so much over the years. Some parents remember what it was like to have a CDH child 15 yrs ago - there was NO SUPPORT. No information. No organizations. No internet. No library books that explained things. No help from any other organization for birth defects. No nothing. You were alone, without information, without support, trying to stay afloat in all the CDH lingo and stress.
When my son was born the doctors gave me little information. Let's just say his surgeons he had the first yr of his life did not have very good bed side manners. Any information that I had, I either learned from the nurses, respiratory therapists, another CDH mom, neonatalogists or in the medical library myself. I used to lug a diaper bag around the hospital - not full of baby supplies because my baby was lying in intensive care - but full of research articles that I copied out of medical journals in the library. I was in Duke's medical library so much I had a library card, knew the staff and knew which computers and copiers worked the best. Some days that diaper bag would be so full I could barely carry it. I'd unload the research articles on a tray table beside Shane's hospital bed, pull out a highlighter and go through each one finding information.... all while he slept beside me drugged up on Fentanyl or Morphine or any number of painkillers and sedatives while he was recuperating from surgery or a complication.
It was in these medical journal articles that I learned that despite the surgeon's claims that there was only 1 pediatric trach made in the entire world and we had to use it, even though it was causing a stoma so large in my son's throat that you could see his esophagus and we had to pack and pack gauze in the wound while he cried (under sedation) because it hurt so bad - that there was indeed more than 1 trach manufacturer for pediatrics.
It was in these medical journal articles that I learned that it was completely absurd to use tissue from a pulmonary sequestration to try to repair a hernia because NO ONE HAD EVER DONE IT BEFORE... before it had been done on my son, when I was 19 and he was 3 days old and I didn't know to say no. I didn't know because I had no information.
It was in these medical journal articles that I learned that CDH is as common as cystic fibrosis and spina bifida. I learned about recessive genes and possible links to CDH. I learned about Cornelia de Lange Syndrome when the doctors thought Shane might have had it (he didn't). I learned about using abdominal wall muscle to repair CDH and presented the surgeons with printed articles when they said I was crazy for suggesting it.
I learned and I read and I studied and I learned some more. When Shane came home from the hospital, I continued to learn and read. I signed up for classes at the local community college for medical terminology, biology and anatomy so that I could learn more. I took alternative courses at UNC for genetics and embryology. I learned what epidemiology was and gained a passion for it.
I learned to get Shane a new surgeon - and I did and she was and is amazing, and is still on our Board at CHERUBS, along with many other surgeons and nurses and epidemiologists that I met in my research over the years. I am so proud to say that our Medical Advisors and conference speakers are the best in the world!
I took all this knowledge... though in the grand scheme of CDH, it's just a drop in the bucket because no one knows all there is to know about CDH still.... and together with another CDH mom, started CHERUBS. Not because we wanted support. Not because we wanted to make our own cherub's saints or immortalized or put on pedestals. Not because we wanted recognition or to make friends or be popular... because that's not our personalities and because that didn't even exist in the days of writing letters through postal mail. But for 1 reason - because we didn't want other families to go through CDH alone and without information.
We met more CDH moms and together we took our combined knowledge and we compiled CHERUBS Congenital Diaphragmatic Hernia Research Surveys - by hand. This knowledge bought us to conferences around the country, bought CHERUBS to the CDH Study Group table. This knowledge is what created CHERUBS.
This knowledge is something that parents should have at their disposal without having to go through all I did to gain it, or all Rhonda did to gain it. That is what CHERUBS is for.
15 yrs ago there was no internet. Our organization was started by writing letters, 1000's of letters. You did not get immediate responses like today's e-mail - you sometimes waited months. You did not have information within seconds through Google - you drove to a library and you found it in a book.
12 yrs ago CHERUBS went on-line. Our first web site was a year later. There was no free web site software, there was no myspace or facebook. Google wasn't around yet. You had to hand code html to create a web site. You had to search and search for CDH families to build an on-line support group. There was no free software or blogs to help. There were no other support groups to join and learn from and get members from to start our own. We were pioneers.
We worked hard. We created our site. We added 100's of pages of information for CDH families. We lost countless hours with our families and cherubs to put all the on-line resources together for other CDH families. We learned what a chatroom was. How to use search engine optimization. How to install a database. We learned how to create graphics and a logo and our own site template. We started our listservs on Yahoo in 1998 and then upgraded to forums, which are safer and more user friendly. By trial and error, we learned. With no one to teach us, we learned.
Now, in 2010 there are many support groups. Anyone who can create a free blog or listserv or Facebook page and fill out a form on the IRS site with free software can create a non-profit support group. How amazing it is that so much has changed and how I wish it had been that easy for us! Now organizations are taking all CHERUBS has done and our groundwork and building off of it... furthering our cause. Learning more about CDH. Helping more CDH families. Some have said that we haven't gone far enough in 15 years - but we stared with nothing, we laid the foundation, we broke ground - and we are still working, still building, still doing new things every year. We are still leading the way and inspiring others.
How far we all have come..... how far CHERUBS and the CDH community has come in 15 years. Happy Birthday CHERUBS!!!!
We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.