Tuesday, August 24, 2010

CDH - Congenital Diaphragmatic Hernia

Okay, so I'm now up on the lingo around this issue!  Henseforth, I will probably refer to my little goober's issue as CDH. We have another ultrasound and Dr.s appointment on Thursday. I'm hoping I get a different doctor this time: two weeks ago, I had one of those doctors who couldn't seem to answer my questions with a concise answer, choosing instead to go completely off-topic on diatribes of random information, wasting both his and my time. 

Oh yes, and he also implied that whether my birth plan was to go without epidural or not, I would want one.  Believe me, I mean this when I say I am going to do whatever I can to go the natural route (barring a lack of choice, of course). I have lots of support - my Mom, hubby and two doulas - and we shall see, but I really don't appreciate men who scoff at the idea that I can deliver without meds!  Yes, it's still entirely possible that I will beg for it, but my PLAN is to try go without.  Why is that something to laugh at?

So back to the CDH.  I met an amazing little 16 mo. old girl last night.  Her name is Georgia, and she survived CDH surgery shortly after birth.  Her parents are wonderful, and her Mom, a blogger as well.  Prior to heading over for the meeting, I had a look way back to the beginning of her tale to read up on what she experienced.  Georgia's story is the very best case scenario, but nevertheless, it was still so very hard to read about in parts.  It all became very real what we are going to experience in less than three months.

While speaking to Georgia's Mom, we discovered that she had met other parents in Ottawa dealing with the issue, but not in any organized way (in fact, she, like me, was just lucky to know people who knew people etc.), which got me thinking. The information you find online about this condition is either very clinical, or reflective of more international, or US-based information and statistics - but what of the experiences of the parents and babies locally? What about putting together a website and forum, and lining up experienced parents who have made it through to help other parents facing this crazy situation?  Something I might consider...however I wish I had better html training to do it properly...any resources, ideas or volunteers?

So, have I mentioned before now how lucky we are to be here in Ottawa facing a baby with CDH?  We are.  After talking to both the CHEO surgeon, and comparing that to the information I got from Georgia's parents, we feel a lot more positive about the eventual outcome of this ordeal.  Unlike other areas of the world, it seems the track record for Ottawa's survival rate is far better than the 50% worldwide rate.  No, we don't really know the percentage, but last year we think there were at least 4 cases, and all survived. No, we also don't know to what extent the recovery was a complete one without residual medical conditions (which is entirely possible).  We also don't know what the average recovery time was, which, according to the CHEO surgeon can be months - much longer than the one month Georgia spent in the hospital. 

We are hoping we can get some anecdotal information from the neonatologist we are meeting next week.  They are the primary and key players in this whole thing, as they are the ones who help to stabilize the baby upon birth and help her breathe, and they are also the ones who carefully tend to the poor little ones after their surgery. They know a lot about the care of these little ones, as well as the ins and outs of the experience for the parents.  Not sure just how many combo twins/CDH cases they have, but they can probably answer some of our questions about how to be at the hospital and also have a baby to tend to NOT in the hospital.  Can she come in to be with her sister, or will she have to be separated for the long haul? Where can one of us go with one baby while the other parent visits the hospitalized baby?  What are our options for staying there/sleeping etc.?  Lots of questions, you know?  It's gonna be quite a challenge.

But we really do feel positive about her chances.  We think it will all work out in the end. And we feel very, very supported by friends, family, the team of specialists who will help us all along, and now, the generous family that has been through this situation, and who selflessly offered us their time and insights. I will be sure to offer the same to any other parents-to-be facing a baby with CDH...


  1. Hello my daughter Ava was born with CDH almost 4 years ago. Stay positive! You can read our story at http://avaslifewithcdh.blogspot.com If you have any questions or want to talk you can find my email address on the blog.

  2. Terri, thank you so much for sharing. I have taken a look at your blog, and will spend more time reading for certain. Ava is a lovely girl...

  3. Hi Pamela - My son just turned 3 and is a CDH survivor - we're thinking of you and your little ones!