Not lightening twice, just weathering a tornado this time...

It’s funny that for some people, when things are going well they need/want to blog. They want to share with the world how good things are. For us, when things are good it’s a huge effort to sit down and write; to take time away from a life that is for all accounts, perfect and instead of living about life, writing about it. It’s so contradictory to what works for us and we have to force ourselves to do so because we know that for some, this connection of photos/videos and words are the only connection some have of our day to day life.

But when things turn sour, for me at least, I need to reflect and what better way to do so than with words. Words allow you to come back time and again and revisit the emotions that hopefully will one day be a simply fleeting memory rather than the all-encompassing waves (both euphoric and not so much) that we’re experiencing again.

A few months ago our lives were further enhanced by another blessing. Our 5^th (1^st try for #2) IVF cycle was successful and we were once again expecting a new addition to our family. After much fear (after all, nothing ever comes easy for us) on New Year’s Eve Day we received the news that we had an additional celebration to add to the day – a healthy heart beat.

For the next couple of months that euphoria was enough to lull us into letting our guard down and make us believe that maybe, just once, something would come easy for us (if you can say paying $10,000, traveling copious hours/kms to a clinic and allowing a team of medical professionals easy access to your nether regions easy) and that we would be lucky to have another baby in one ‘relatively’ easy shot.

Rest assured someone up there didn’t forget about us (not in a good way either). Just when we let down our guard and assumed that life would allow us smooth sailing (after all, didn’t we pay our dues with all the previous hurdles we’ve encountered) we learned that this baby was at an elevated risk for Down’s Syndrome. Certainly though, the odds were still in our favour (but when has that ever stopped bad luck from knocking at our door) and we, after a bit of reflection and soul searching, opted out of the invasive testing and opted to let what will be, be. If this child was affected by Down’s Syndrome, then we would face that challenge. After all, a healthy baby was our goal.
Then, we had our much anticipated Anatomy Scan. The wonderful ultrasound where we have a chance to see the baby where he/she actually looks like a baby (not that little alien that’s been renting space down there). It was also the much anticipated time where we would learn the gender (this time we wanted to know).

We knew there was a chance that there would be added indicators of Down’s (soft markers they call them) and we knew that even with those markers, we would carry on.

The wonderful news is: It’s a girl. What we weren’t prepared for was the ‘other news’. After 2 ultrasound technicians looked at the baby (separately) and the radiologist came in to take a look we knew that the news wasn’t good.

Congenital Diaphragmatic Hernia (CDH). When we heard the term from the radiologist and a quick description (a hole in the diaphragm) we thought, ok, that’s not that bad, it’s not like one of her heart valves isn’t working. Little did we know that we may have been better off with one of her heart valves not working.

We’re still waiting for a lot of information and we expect to learn more about where our little one lies on the spectrum of degree of severity of CDH.

This at a minimum is what we know:

Overall survival rates are 50%. Depending on where you lie on the spectrum will better determine what the baby’s survival rates are. 95% of CDH survivors will have life long effects of the defect in various forms (of course depending on the degree of severity) and almost all have diminished lung capacity - no future Olympian here. (ETA: this is not true. In fact, during the 2012 Olympics one of the marathon runners from Australia was/is a CDH survivor.  They can be Olympians, even Olympians outside of Ping Pong and Curling).

Effectively, because of the hole in the diaphragm when the baby sucks in to ‘breath’ it pulls organs from the abdomen up into the chest cavity. The additional organs then prevent the lungs from developing to the size required to sustain normal lung function; often, not enough to sustain life.

We know that there are enough abdominal organs in her chest cavity to cause her heart to be pushed to the right side of her chest. We also know (as mentioned by the radiologist) that her bowels are currently in her chest. The radiologist also mentioned that she has seen worse cases (she didn’t elaborate whether she’s seen worse cases that survived). She also mentioned that she’s seen severe cases survive and not so severe cases not make it.

We believe (assuming since the heart has been pushed to the right) that the hole is on the left side (the most common).

CDH is also often associated with other defects (heart defects) and other issues (chromosome abnormalities – ie Down’s). We do not know if the little one has any other underlying issues.

For now that’s all we know.

We are waiting to hear from Women & Children’s hospital in Vancouver. I anticipate we’ll be seeing the same Perinatologist team we saw last time. Not sure yet if that’s a good or bad omen. We hope to know more during the week of March 28-Apr 1 and when we do know more, I’ll be sure to update. In the meantime, you may have to sit back and put up with my rants.