Long Term Support for CDH

One of the new CDH families wrote a blog post last week that really got me thinking. She (rightfully) complained that she was not receiving enough support after bringing home her cherub from the hospital. That feeding issues and therapies were hard and no one was talking about it and she had no where to turn. That the groups she was in just talked about the pregnancy and time immediately after birth and then she was left on her own to go from there. I could feel her frustration and loneliness in her post. I could feel it, because I’ve been there. And that’s what got me thinking.

This mom isn’t an active member of CHERUBS. She’s one of the new families swayed by drama who’ve been told to stay away from CHERUBS. Why? Because we’re one of the groups standing up against those groups who are hurting families. There are dozens of new and expectant parents who are found through blog searches and “befriended” and “recruited” to join “CDH support groups”. New and expectant parents who are at their most vulnerable, already dealing with CDH and in the midst of thier diagnois or grief and caught up in those agendas, drama, slander and the lies told to keep them away from information and support – that they obviously desperately need. It’s shameful and it’s sickening and it’s sad and it breaks my heart that the CDH road is being made harder for families than easier. Those parents and children deserve so much better!

And then I realized we’re partly to blame for this as well. We don’t post what we offer that much. And we offer a ton – more than all the other CDH organizations put together and for 3 times longer. BUT, we work with 90% of the other CDH organization to make life easier for these families! It’s a global group effort through ACDHO and we’ve helped 1000’s of CDH families over the past 14 years.

When my son was born there was NO SUPPORT. No internet, no googling “Congenital Diaphragmatic Hernia”, no organizations – nothing. When we bought him home, we had no one to turn to. When were in the hospital we had no one to turn to except one other CDH mom. She was a godsend and I love her like a sister to this day – but she will be the first to tell you that she can only give advice and information about the neonatal period. She lost her son at just over a month old – her experiences are very limited and heart-breaking but she can explain about ECMO and CDH repair and vent weaning and staph infections and pneumonia. But she will tell parents – as she told me when Shane came home – that she doesn’t have the experiences to draw accurate advice on how to deal with a CDH baby who lives for a longer time or who does come home. She was all the support I had – and she couldn’t help me.

So I struggled on my own – frustrated, alone and crying almost daily because it’s completely overwhelming to take care of any new baby – much less one who could stop breathing at any moment or for who feeding is a huge ordeal. Don’t get me wrong – I was so BLESSED to bring him home and I knew that – but being home with a sick baby without support was horrible. What I wouldn’t have given to have 1 other CDH parent who had walked in my shoes to tell me it was OK to be upset or disappointed. That it was OK to feel frustrated when my cherub wouldn’t eat. Or it was OK to cry because we couldn’t do the things other parents of healthy children took for granted – like just going to church or shopping around crowds, or not having therapists and nurses in our house all the time, etc. But there was no one.

That’s why CHERUBS was founded. Not in memory of one child. Not in some misguided, grief-stricken, angry quest. Not in some popularity contest. Not in some agenda to profit off of sick children. There was only 1 reason why CHERUBS was founded – to help other CDH families so that no one felt alone and every CDH parent had the information and support that they needed – along with advocating for awareness and research.

At CHERUBS parents talk about Long Term issues associated with CDH. Information and advice given by parents who have walked in the same shoes – not from people who have read about it in other people’s stories. We don’t just focus on birth and CDH repair and getting the babies home. We focus on the whole picture – pregnancy, birth, neonatal and beyond. We have forums for support for feeding issues and developmental delay – things often dealt with for years after coming home. We have forums for older survivors – some of our survivors have graduated high school, college, gotten married and had babies of their own – lives after CDH that is barely charted territory and these survivors especially need support. We also offer support for just the dads and siblings, for grandparents, for other birth defects or genetic issues.

And we offer support to ALL CDH families. Grieving parents know we are ALWAYS there for them, through the deaths and funerals, long after their families and friends have forgotten their cherub’s birthday and angelversaries – we still remember. We support those grieving parents who made all decisions – whether they chose to terminate or go to term – whether they chose extensive medical support or letting their child go at birth. You will never see pro-life or pro-choice issues raised at CHERUBS. We offer parents all the information on CDH possible – so that they can make informed decisions. Not all CDH parents have that information and regret the decisions that they make. We are there to offer ALL CDH families support – not to make personal judgments or religious condemnations.

At CHERUBS there is A LOT of support – usually over 100 posts each day on all of these topics!

At CHERUBS we recommend families get support from as many different sources as possible. From as many different CDH groups as possible. We work hard to have their best interests at heart – to do what’s right for these children and their families.

No one dealing with CDH ever has to deal with any CDH related issue alone again. And in reaching our goal that we set when founded – CHERUBS is a success. Helping families is our goal and will always be.

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