Reflections on the past 25 years by the CDH International team:
Warning to our new and expectant families… this post is not positive. It’s not nice. It’s full of negativity and drama but it’s part of the history of the CDH Community.
We advise you to just skip over this post and go back to the positive posts on our site.
“CDHi doesn’t work with other charities.”
“Dawn wants to run the only CDH charity.”
We’ve heard this gossip for years. It’s thrown at us by competing charities as if it’s a fact we somehow don’t know about ourselves and not the untruthful, divisive gossip that it is.
So let’s talk about how CDHi works with other charities… I may jump around time wise to try to tell all the part of the story in a way that it makes sense…
CDH International was started in 1995 as “CHERUBS.” To our knowledge at the time, we were the only Congenital Diaphragmatic Hernia charity. It wasn’t until the internet came along that we found another charity, Stichting Hernia Diafragmatica in the Netherlands.
We welcomed the leader of that group and his family into our membership with open arms. We became fast friends. There was never any competition.
When we held the first ever CDH Conference in 2000, we invited the leader of the Dutch group to attend and paid for lodging (as we did with all families that year through a grant we were given).
When we first started attending the CDH Study Group conferences in 2013, it was being held in the Netherlands. I was invited to stay in their home and I was treated like a part of their family.
This is the tone that we set for all CDH charities and one we had hoped that the newer generations would strive to match. To work together to help all the children and support all families the best that we could.
For the most part, this is how everyone behaved for years. And CHERUBS started to recruit Representatives from other countries as volunteers for our charity to better serve families in their countries. This worked very well for several years. In several countries, the Reps did so well that we introduced them to all our medical and other charity contacts, helped them create materials for their countries and much more.
So it seemed natural that in 2004, 2 of those countries wanted their own NGO status so they could serve families better. Without a written contract and on trust alone, we agreed to let them use our name, logos, materials, member lists and contacts. We fully supported them for years and they held our hands and remained in our membership for years.
But let’s back up a bit….
In 2000, my sister was diagnosed with terminal cancer. She fought Rhabdomyosarcoma for 2 years and was a single mom of 3 very young children. This happened on the heels on my own son’s death and the death of my grandfather (my father figure) – as well as a devastating divorce from my son’s father. My son – my only child – died in 1999 at 6 years old from CDH. In the midst of all this, I still ran the charity and a company while I helped take care of my sister and her children.
As you can imagine, it was a very hard time and sadly, my right hand at the charity at the time, Judi Toth, was also dealing with health issues that were now plaguing her as a survivor of the Pentagon on 9/11. This put great strain on the charity and no one helped to relieve us of some of our duties.
By 2001 there was a rumbling in the charity…”CHERUBS isn’t doing enough. Dawn is failing. I’m going to start my own charity…” by one of our then volunteers. It devolved into stalking, harassing, harming the charity in many many ways for many years – most of which we never went public with to avoid drama and protect families. And it divided the CDH community straight down the middle. And by 2006 legal protection was sought.
By 2008, this same person had trashed the charity and myself all over social media and any clearing up of information was met with negativity. Slander and libel was flowing. Gossip and false accusations were whispered to the other charities to try to get them to “take sides.” It worked. All the good things that CHERUBS did to help other charities get started and help those “leaders” personally with their own CDH journeys was dismissed as they decided to believe the lies told to them by a group who was hell bent on destroying CHERUBS and pulling all families and donors to their “charity.”
Other splinter groups formed. Local groups. Stay at home moms who saw other moms starting Facebook groups and charities wanted their own too. Some formed because we had to tell them no – that money they wanted for themselves or their families or an event about them or publicity solely about them… wasn’t in our mission statement. We can’t please everyone all the time and we don’t have funds to give people everything they want when our focus is all these children. Every charity struggles with this. The larger the charity, the more often it happens. The more successful the charity, the more often it happens. With 1000’s of families in emotional turmoil – sometimes personal emotions and goals distract from the cause.
It came to a head when the original splinter group decided to trademark “Congenital Diaphragmatic Hernia Awareness” and “Congenital Diaphragmatic Hernia Awareness Day,” which they chose on their own to be based on their charity.
Every time CHERUBS said “Congenital Diaphragmatic Hernia Awareness” we were threatened to be sued. Only one group was allowed to raise awareness, use a ribbon, participate in the day – unless you aligned yourself with them.
Families were disgusted and rallied together to fight this. The other new charities rallied together to fight this. There were petitions and videos, blog posts for days. For 2 years we fought this with pro bono lawyers.
On April 19, 2010, the trademarks were removed. Awareness was once again free for all. This is how Global Congenital Diaphragmatic Hernia Awareness Day was chosen.
In 2010, we held a big CDH Conference in San Antonio, TX. The 2 other country charities sent their leaders. We welcomed them; so proud of their accomplishments that we presented them with trophies. We introduced them to the leaders of the CDH Study Group. We introduced them to genetic research. We bragged about them. We were all friends and fully supported them.
But the slander and the libel from the splinter charity continued… fueled by anger that the trademark had been removed and the personal restraining order I had taken out to protect myself was dismissed by a judge who agreed this person was guilty but didn’t understand the new social media or internet harm and advised us to sue this person and their charity with a torte suit instead. This would have created more havoc and pain in the CDH Community, so our Board voted against us. We were then sitting ducks for bullying and I was unable to correct anything. Occasionally I’d lose my temper and respond to the nonsense, but there was never a full Board, public stand against what was happening, with all the attacks laid out and all the slander and libel corrected. I was advised to “to keep the peace” and “take the high road.”
Another charity started with some donations given to our charity (but in their possession) by people who met in our forums against our will. More division. Those groups banded together. Any efforts we made to protect our charity were met with attacks, exposing families to drama, slander and more libel.
The invention of social media happened around this time and mob mentality is easily employed upon moms and dads who are already emotionally devastated fighting CDH. Even expectant parents and those in the NICU were targeted for “sides.”
We became a divided community and because CHERUBS was the biggest charity and the one fighting hardest to keep the community together – and the one deemed “competition” by splintering groups…we were now the target of all those who wanted to start their own charities or who were angry at CDH or who were unstable. And by CHERUBS, I mean me. I was the target. My family. My job. My deceased son. Nothing was off limits.
The 2 charities that we helped to start and gave all our membership data, logos, materials, connections and support to, decided to align themselves with the charity attacking us and they attacked too. No doubt feeling justified in doing so as they believed the lies and slander. In their defense, we didn’t give them all the facts of what was going on. We didn’t want to put other charities in the middle. We never dreamed they would become part of the division too. All these years later and they still are negative to our charity. One of them blatantly slanders and libels our charity in the research world, causing irreparable damage to the community and the children as they strive to compete with us rather than collaborate – despite our many attempts to put out an olive branch to all of these groups.
Where did this leave CDH families? Either trying to join all the groups and desperately staying neutral so they could get any help they could for their children or joining in on the hate… because it was a way to feel united and their anger against Congenital Diaphragmatic Hernia needed an outlet. Those who took the time to look up court records and knew the truth or who were members before the division and knew the character of our charity and our leaders, tried to ignore the splinter groups and drama makers. These families were the ones whose focus was on the children and they would not be bothered to be drug into the mud, much less combat it.
Many, many parents were upset by the division and avoided all CDH charities completely and battled the Congenital Diaphragmatic Hernia monster on their own without support.
If we spoke up at all, the splinter groups would scream “you’re upsetting the families! How unprofessional!”… nevermind the dirty work they were doing behind the scenes or the public libel and slander they were pouring out.
It was bullying in the early days of social media and it worked.
By not correcting the slander and libel, families believed the lies they were being spoon fed. By not telling families everything that was going on…
- when false allegations were filed with the state by another charity
- when IRS agents were in my home in front of my step-kids due to more false allegations
- when our charity was kicked out of a contest that would’ve bought in research money because a competing charity e-mailed them with libel because they were jealous of our contest involvement
- when my dying sister was visited in the hospital to try to get dirt on me. Yes, you read that correctly.
- when our site was hacked
- when my work clients were being contacted
- my ex-husband contacted
- charity sponsors contacted
- charity donors contacted
- our charity events were crashed
- when fake accounts were popping up all over social media blasting our charity
- when entire hate blogs were being written
- when they lied to researchers and got us blacklisted from a meeting
- when they volunteered for us but made an event about them
- volunteered for us to just get member lists or research contacts
- when they are bashing us on social media non-stop personally and professionally
- when they are writing false reviews of our charity when they’ve never been members
- when 100’s of families have been told to stay away from our charity
- when families are told that we tell them to not go to a specific hospital so they will stay away from us and/or not donate to us
- when more families have been told our charity is “all about dead babies” and other awful things
- when grieving families have been attacked
- when money outranks the kids
- when we can’t post our work because others will interfere
- when I’m followed around at medical conferences so someone can make sure to talk to everyone that I talk to
- when researchers are “warned” not to work with us
- when other charities are “warned” not work with us
- when hospitals are threatened to lose research funds if they work with us
- Etc, etc, etc, etc.
That is just a few of the things done to us directly. I am not listing 90% of the things done.
Families had no idea that the “new, wonderful CDH charities” or those giving them lots of free stuff were doing these awful things to CHERUBS / CDH International behind the scenes while trashing us…. what were families to believe? What were other charities to believe? Even though court records were freely available, even though their personalities are obvious in all the other aggressive posts they post about other people in their lives… people took sides of their “friends”… not the side of working together and helping all the children, professionally and honestly without ulterior motives.
Sadly, people generally believe negative things they hear – the media and social media thrives on that. And they will believe those things without proof and if someone contradicts that even with proof it’s not true, they say “they are defending themselves so it must be true!”.
This allows awful people to say awful things about good people doing good things. Why would people want to do that? We wish we knew. It seems it’s the state of the world now.
But good people doing good things don’t have time to badmouth others or distract from their work. We wish everyone success in helping these children and have not and would not detract from anyone’s efforts to save these kids.
And they don’t just do these things to us. Other charities are targeted. Families are targeted if they speak up.
I am not calling out any unethical, illegal or dishonest things these people are doing in their own charities. We are not the CDH police, nor do we have time to monitor what others are doing when we are focused on our own work.
1 of these actions is awful. Dozens.. hundreds… is just a normal year in the CDH Community sadly. It shouldn’t be tolerated. Any of it. But as long as someone seems “nice” or gives a check, shirt, totebag, etc… any bad behavior harmful to the community is overlooked. And anyone who calls it out is labeled “awful” and “drama”.
It’s the Twilight Zone. It’s high school.
People have forgotten why we are all here.
The ripples of one person’s desire to destroy our charity to run their own hurt the entire community and put back research for years and encouraged others to behave just as badly. Our once completely positive and supportive community got infected and has yet to recover. It’s the children who have been hurt the most.
By not all working together as one community and combining resources and efforts, it divided and duplicated valuable time and resources lost in a self-serving quest to be the best, biggest or to have one name or logo known.
We have all these people vying for a piece of the pie… but the children are not a pie.
Someday the people who have done all these awful things will have to answer for them. The children will hold them accountable. The grieving families. Their own children and grandchildren. The souls of those lost. Karma. God or whatever you / they believe. There are consequences to such awful behavior and our children have been paying for it thus far.
Notice that I am not naming anyone here. I am simply telling the story of the division of the CDH Community. And I don’t pretend to be blameless in it all. I have a short temper and a big mouth and I should have done many things differently. Mainly hired attorneys to nip it in the bud and put out public statements so families had facts before it pulled down the community for years. We tried to be nice and professional to our own – but it was to the community’s – detriment.
It was heart-breaking, not just for me personally and my family but for all the charity members. And it has been going on for 15 years almost. The community has never recovered. To this day, there are people I have never met, who our charity has helped, who still post nasty things on social media to try to fit in with others who post nasty things. The libel and slander is still perpetuated. I am still stalked. I do not post anything personal on-line because of this, for anything I say or do is dissected into something negative or scandalous.
I was grateful to step aside and run the research department and let Tracy take over the support department… naively thinking maybe the drama and competition would end. It hasn’t. Now, they involve medical professionals with their own agendas, whether to get money from those charities or have patients referred to them.
We don’t post the conferences that I will attend, 99% of the work that we do, who work with, etc… because those competing will contact them and try to hinder our work. You read that right – hinder research to help children born with Congenital Diaphragmatic Hernia.
They have also told other charities that if they want to be involved in research that they fund, they cannot work with CDHi.
Some medical professionals and other charity leaders have pointedly said to us “they are desperately trying to be CDH International and that person is desperately trying to be you (Dawn)”. The irony is thick. I suppose that’s a compliment of our work.
Thankfully, we have an international legal team now to deal with such nonsense.
Sadly, the doctors and nurses and researchers watch it all at conferences and on social media. I know this because they tell me how disgusted they are and how frustrating it is for them to have to work with so many groups for one disease. It’s a waste of their time to explain the same information to 10 different groups or go to several different conferences or to have to answer e-mails from 30 different people desperately trying to legitimize their charities or Facebook groups by having conversations with researchers.
They know – and repeatedly tell me – that only diseases (or in our case defects) with a united community are those who find causes and cures. Not divided ones.
But that fact falls on the deaf ears of those screaming “you just want to be the ONLY charity” because they want to do their own things for their own reasons and research be damned.
And all this damage continues with some newer charities too. They don’t know any better.
We do what we’ve always done….distance ourselves from the negative groups who gossip, slander, libel and attack. Distance ourselves from families who work with those charities so they are not put in the middle – though we are always here if they want or need us. You do not see us post anything about groups or charities who are not part of ACDHO. You don’t see me stand up for myself or attack anyone. This is the first such post in a decade. You don’t see the cease and desists we have to send, asking them to act professionally. Occasionally, when the nastiness from these groups reaches a high level, I will post screenshots of their behavior on my personal Facebook wall, but we won’t attack them back and we accuse them of nothing – no matter the very real awful things they may be doing.
It does still hurt to be attacked by people we’ve helped. For nothing we’ve done wrong. Because they believe lies or have made assumptions on who I am and what they charity stands for…as I work 60 hours a week for their kids, and Tracy works full-time and all our 100 volunteers give up time from their families to help others.
In reality, I’m just a grieving mom insanely still here after 25 years trying to save other people’s children against all odds with some of the very people who should be fighting CDH instead of fighting our charity simply because it’s not their charity.
My 6 year old son died in my arms at home over 20 years ago and every day, I drag myself back through CDH and all that pain, putting my own story and child aside to work 60 hours a week to try to stop another family going through that too. The nasty people forget that. They have zero compassion for me, my child, my family or the fact that we simply tried to help them and all other families to the best of our abilities while going through our own trials. They completely dismiss that I am a CDH mom also.
I don’t understand how people who don’t get that can truly help other families without any personal motives. You cannot focus on helping the children if you cannot focus on helping all the children and all the families and first do no harm.
In reality, attacking CDH International is not attacking me…it’s attacking all the people who work here, volunteer here, the families who find support and comfort here, the supporters and donors who give to help families. It’s attacking our staff who works all hours. It’s attacking our volunteers who work from their own child’s hospital bed or through the anniversary of their death or who are answer e-mails from new parents at midnight on a holiday. It’s attacking all those families who benefit from our services and need us. It’s attacking all those people who support us, the community, the families and want professional, compassionate charities.
In reality, the splinter groups will never see this because it’s not about the children to them – it’s about competing and being the best, or elevating a name or recognizing their logo by any means necessary.
I spend far too much time wondering what our children would think of this behavior. And far too many tears crying over how we are letting these children down.
I’ve wanted to quit this job a million times. My life would be so much easier if I had. I could’ve had a different career with a living wage, insurance, retirement. I could’ve had time off in the evening and on weekends instead of the horrible strain this job has put on my family. I could’ve had a life outside of CDH and a life where I could relax and not live under a microscope. But the babies needed help and the volunteers were working too and CDH has to be stopped and the majority of the families are kind and appreciative and collaborative and, and, and….. so I stayed. For 25 years.
These children need good, honest people who will fight Congenital Diaphragmatic Hernia, not each other.
Even though we have to wade through the negativity, dishonesty and competition… our focus has always been and will always be these children.
All of what’s said in this post can be seen in progression in our forums, listservs, on social media, in court documents, in the USPTO documents and backed up by all the families who were present during the events, on our Boards, or who have been told false information by competing groups.
This is my way of setting the record straight on all of this nonsense, calm the lies and give families the truth if they care to read it. And give hope to all the other good charities dealing with competitive nastiness.
But in this next 25 years, we will not anything to hurt research or all these children or our charity. No more silently taking the punches to “take the high road”. We will quietly use our legal team and our legal rights to the fullest extent and publicly hold people accountable for their behavior if we need to. Without hesitation. We have nothing to lose by being honest and standing up for what’s right. And maybe clean up the mud and greed in the CDH community by doing so and giving these children a real hope for CDH research and the families and the good charities some peace.
So about that old gossip “CDHi doesn’t work with other charities” or “Dawn wants to run the only CDH charity…”
Enough of this drama, though it’s sadly part of the history of CDH community.
Let’s talk about how we work together with all the good people in the CDH Community. And how we are a part of a great group of charities that strive to protect families from negativity and false information.
And let’s not allow anyone or anything to drag down these children or their chances for survival through research or their families’ sources of support.
Let’s work together as a whole community to shut down libel, slander, gossip, negativity, dishonest, greed and competition. If someone tries to defame a charity or charity leader, cut them off. Ask them what they hope to gain by trying to make you believe negative things about others. Ask them what they are doing to help the CDH Community and if they are doing something original – ask them if their work can stand on it’s own without trashing others. Let’s raise the standards we hold people to.
Support the charities who lift the community up. Encourage those who do good without ulterior motives. Research, research, research. Question everything. Stay focused on the only thing that matters – these kids.
– Dawn Ireland, President
