We are NOT defined by CDH

This post is a different sort of post.  Its a post more geared towards parents of, or people with congenital diaphragmatic hernias ("CDH") who seek out our site or check in on us, those who want to read other's experiences, maybe to see what their future holds, to find similar experiences, to find new/different experiences.   What ever the reason is that anyone touched by CDH seeks out our blog, this is directed at you.

But first a pre-empt. Recently I was 'kicked off' a Facebook site for 'challenging' a comment made by the moderator.  From my perspective*, I cautioned against a statement I believed was too close to being phrases as medical opinion.  I thought I did it with diplomacy (ie: "we should be careful with comments like xyz as it comes close to reading like its medical advice and it could be interpreted as such", it also went against medical advice which I also noted).

In addition to that I was trying to make another point. One that I find VERY important as a parent to a child with a defect that brings a variety of issues through out life.  The point being "do NOT let the defect dictate your child and your parenting goals (whether they be emotional, medical or physical) 100% of the time".   Yes, they will dictate it some of the time, it needs to, but not all of the time.

Which reason I was 'booted off' for, I'm not 100% sure (the moderator made no effort to contact me directly, instead she removed me and my comments quickly and quietly).  So, I come to the only place I do have control.  My blog :).

Going back to why I felt it important to share my views (and I'll be more detailed in my description, I brought these issues up because I feel they are important).

1. As a survivour or a parent of a survivour with a defect that comes with many different facets, information is KEY.  Seek out as much information as possible.  No one person has all the answers, find different opinions, listen to why each person has differing opinions, then with the guidence of your medical professional (one who I hope you trust) find an answer that works for you!!  It may take one or two tries or tweaks to find that answer, but ultimately, the more infomation you have, the more equipt you are to make the right decisions.  A right decision for you may not be the right decision for others.

2. Be cautious of anyone who outright contradicts your medical team. While most people have good intentions, you (and your medical team) know your child best.  That's not to say you shouldn't take that advice/information and 'question your medical team' (as in ask them questions not question their ability...if you question their ability you may need another team, one you can trust above the advice of a non professional stranger).  All too often I hear advice that contradicts a medical opinion.  There is nothing wrong with questioning medical opinions or seeking a second medical opinion (even medical personel don't have all the answers) but there is something wrong when a non-medical person, who has never met your child or knows your child, states that a doctor is doing something wrong or worse, instills fear in a parent by saying the medical professional may be endanger that child.  

For what its worth I have commented on CDH related questions where I have said "it doesn't sound right what your medical doctor is saying and these are the questions I'd recommend asking to clarify".  Often the person generating the question has interpreted it incorrectly.

3. Carry over from #2, learn to sort out the difference between opinions/others' experiences and careless-all-encompassing-statements that are not scientifically or medically founded (or are the result of an emotional perception. As parents we generally mix a lot of emotion in our advise, its natural and we're all guilty of it...learn to differentiate when emotion is driving a person's opinion vs experience).

A good example of this pneumonia.  Our CDH'r is prone to pneumonia.  Emotion is often what had me down at the ER in the middle of the night waiting on a chest x-ray.  A scared emotion.  If I were to post my past experience it may read "I take my child down to the ER for an x-ray any time she has a fever".  A decision I know that was driven by my emotions.  Half the time I was correct in my concerns, half I was not...I've learned to educate myself so its becoming more about knowing my child's symptoms (ie fever 1st followed by a cough is more indicative than a cough followed by a fever, ie one signaling bacterial pneumonia the other viral) and less about my emotion that drives my decisions.    Now, if asked I would outline what are Payton's triggers but caution and say every child may have different triggers.

4. Question your medical team.  When you build on point #1 you empower yourself with the ability to question your medical team.  This doesn't have to include accusational questioning, but rather, when a decision is made, if they haven't provided you with the reasoning behind that decision, ASK.  When we were expecting our twin pregnancy I accepted all the medical advice at face value.  I never questioned.  When disaster struck 'that' was my guilt factor.  With our CDH'r I was so much more prepared.  Anytime something major was decided I was educated about the options and I made the team explain the why's behind their reasoning.  At times things were tweaked...at times we went with the recommendation...and I was almost always comfortable with the decision.   There were still mistakes (we are afterall still human), but I'm sure that many mistakes were avoided and often the best decisions were made because of the communication that was had.  Being out of the NICU I still do that and as a result we have found doctors that we trust.

5. Do not let CDH define your child.  I often read about so many parents who question every little thing about their CDH baby (and they should) but the responses I see often make me cringe. 

I'm going to insert an aside here to say "Yes, in some cases, at times in many cases, CDH is the culprit, but it shouldn't ALWAYS be the only culprit we consider and we shouldn't be so ready to blame CDH as the reason our children aren't 'perfect'".

What triggered this thought was the question on Facebook, that resulted in my being booted, was in relation to weight gain and feeding.  The doctor wanted the baby to gain more weight, the mom was afraid of pushing too hard.  The majority of responses leaned towards "CDH babies always have trouble gaining weight".  There was a subtle/not so subtle implication that the mom was right to not expect her baby to gain more weight and the doctor shouldn't have such high expectations.

My responses to the weight gain issue included: #1. weight gain (for me) was important (it was essential for bringing our baby home and I believed it was important for our baby's healthy growth and development and healthy growth and development benefits was a primary reason we opted for the surgery to tube feed our baby).  2. I cautioned against relying too much on the thought that "CDH babies are notorously underweight thus its not you, its the defect aka; don't stress about this and don't let your doctor push the issue" Note: the original poster never suggested any feeding issues just that the doctor wanted to see baby put on more weight.

First things first.  YES, CDH babies CAN have issues with weight.  Does that mean we should just ignore it???  Goodness, no!!!  There are many mothers/fathers out there who every single day fight for each and every calorie they put into their babies.  Its constant and its never ending...and yes, sometimes these children have weight gaining issues, sometimes they require additional medical proceedures to nurish their children.  BUT these parents don't quit.  They do not say "eh, its CDH, my child is going to have issues no matter how I handle it".  No, they fight...sometimes its enough, sometimes its not quite and other steps are needed.

But, when you're just starting this road, you are NOT allowed to give up and accept it as "its just CDH and I don't have to try".  AND, funny enough, it may not be...it may be just lazy baby feeding issues (because normal babies have feeding issues too and its very common that parents have to 'work with baby' to get past it).  Of course its likely CDH issues but even if it is or isn't, it could be that 'trying' may be enough to overcome the problem. We, with our doctor's guidence, need to avoid the thinking "I need to accept it because its part of the defect". 

This goes both ways...sometimes these issues are not surmountable .  It may be that your child DOES need a feeding tube (just because one mom made the decision to not have a feeding tube, worked hard and the end result being the child did fine or the child ended up functioning underweight) doesn't necessarily make it right or 'ok' for your child.  This is where working with your medical team is crucial.  You, and your medical team know your child best, not other parents.  CDH babies are so very different even if the lables we give their issues sound the same.

Its also important to add that another surgery for a child IS a very difficult decision but making that decision does not equate to being a failure.  That one surgery doesn't define your child or you as a parent...and for many its the difference between a life struggling to 'catch up' or being a healthy, happy well nourished baby that is fed a little differently (note: I know its not quite as black and white as I'm making it, what I'm trying to say is there are many different experiences AND different opinions over what is important and what is right.  One person's right doesn't make it right for everyone).

This goes for anything with CDH - please don't let it define your child. 

I hear many parents express concerns over feedings, sleep, behavioural issues, sensory issues, developmental issues, speech, walking, learning in school, the list of concern goes on, all heavily questioned (and often accepted) whether its because of CDH.

Yes, these may be indirectly linked to CDH, but you know what, so many of these issues are seen in many children.  Not walking by 15 months??? Guess what, my neighbours daughter is 15 months and isn't crawling yet (she does NOT have CDH).  Not all developmental delays in a baby with CDH are because they are a baby with CDH .

Don't be so quick to blame issues as CDH and write it off as a side effect and thus "nothing I can do, its a result of the defect".  Even more, heaven forbid we 'ignore the issue' thinking its due to CDH and that issue gets worse.   Fight to give them more than the limitations that label often brings with it. 

We're may not win all the battles that face our children affected by CDH, but we need to try.  Both for our sake as parents, so we can make decisions that are the best interest of our children (and not others) and for our children's sake so they can grow into healthy adults without labels to block their way.



*Please note that the reasons given for my 'removal' from the group are my perceived reasons ONLY.  I have no idea of the why's of my removal.  I believed I was commenting with 'best intentions' and was diplomatic in my comment suggesting the moderator 're-phrase' her comment (and or my topic was a sound, different perspective worth a mention).  As is often the case, its possible the moderator took my comments as they were not intended (ie as a direct attack against her rather than the intent to caution against going against medical advice or suggesting a doctor is endangering your child).  I very much encourage anyone who feels anything I've written here is incorrect or needs clarification (ie maybe I didn't clarify something and its taken the wrong way) or if I've simply offended anyone to please reach out.  I don't mean to offend and if I do, then likely its because I've overlooked something or I worded it wrong.