Friday, October 7, 2011

Day 7: In Search of Happy, Healthy Hearts

Did you know...

Heart defects occur in 40-60% of children with Down syndrome?

Sounds pretty crazy, doesn't it? 

  • 60% of those defects are a Complete AV Canal Defect - AV canal is the tissue that forms the walls between the heart's atria (top chambers) and ventricles (bottom chambers).  When this development is incomplete, the blood leaks backwards through the valves, and heart surgery is required relatively quickly, at 3-4 months in many cases, or earlier if the baby is in active heart failure.  Usually it is preferred that the child reaches a certain weight first, before surgery, to help ensure that they will be strong enough to survive the procedure without complications.  This is what Samantha had.
  • 32% of defects are a Ventricular Septal Defect (VSD).  This is an opening in the wall between the left and right ventricals, and usually causes a murmur.  Some VSDs will close on their own, others will eventually require surgery.
  • 6% of those with heart defects have Tetralogy of Fallot, a complex and very serious anomally that generally requires immediate surgical intervention.
  • Two others, each occurring as 1% of heart defects associated with Down syndrome, are Atrial Septal Defect (ASD) and Isolated Mitral Cleft.
When Samantha was born, not only did I know next to nothing about Down syndrome, struggling to digest that little revelation, but I was totally blind-sided by the visit from a cardiologist in my hospital room who came to drop the big, ugly, unbelievable bombshell on us that she would need open heart surgery in 3-6 months.  No new mom really needs to hear that.  No parent, period, really needs to hear that!  I didn't even know that there were health issues that could be associated with Ds at all. 

Got my first lesson that day.

And in the subsequent days to follow, I discovered how wonderful it was to have not received a prenatal diagnosis.  As it was, I'd had a pretty nice walk-in-the-park of a pregnancy.  No complications, no stress, no worries.  Seriously, if I'd known all of that ahead of time, I think I would have hidden under my bed, a quivering blob of...uh...blobbiness, incapable of speech or rational thought.  I stand in awe of those that can take and digest that information prior to the birth of their babies, who can arm themselves with knowledge and begin their advocacy bright and early.  With the new prenatal testing that's out there, the world will need so many more of those of you who can use the information to prepare, not terminate.

And I exaggerate - I'm sure I would have managed just fine with early info, but I can say with so much certainty that ignorance truly can be bliss in some situations.  :-) 


Team Lando said...

I'm the opposite. I knew for SEVEN MONTHS before I met Ellie... And I cannot imagine NOT knowing. How in the world would I have prepared for the NICU and the surgery?

krlr said...

I knew too. But I was high risk (for diff reasons) and didn't find out until the FOURTH fancy level II ultrasound. No soft markers, they finally just noticed her heart was missing lots of important bits (complete AVSD). We didn't learn about the Ds for another 2-3 wks... And I'll always be grateful for the order that info arrived in. Possibly losing baby puts the rest of it in stark perspective, ya'know?

Shannon said...

Finding out before made for one anxiety-filled pregnancy. Complete AV, VSD and one valve. For two months, they thought she had TGA- Transposition of the Great Arteries, which would be blue baby and immediate surgery. But it disappeared around 30 weeks. But just as anytime you are aware of what you could lose, it made me very very attentive to every detail of my pregnancy- every kick, every roll, the hundreds of ultrasound pictures we got. That's probably the biggest blessing Fiona has given me, she made me treasure my life and what I have ten folds. Its just news you never want to get.

Lynette@ A Hodge Podge Of Randomness said...

Sweet Pea's diagnosis was a surprise, but looking back I'm glad I didn't know before she was born. I wouldn't have been able to enjoy my pregnancy and labor if I had know.

Carrie said...

I knew about the Ds and the heart stuff beforehand...what a wild ride that pregnancy was! I am really grateful I found out before hand because I had time to make peace with it all before Miss B was born and I was able to just love and bond with her and take care of her without any of the emotional drama I had when I first got her diagnosis. That being said, IF (and that's a big IF) I ever got pregnant again, I wouldn't do ANY of the screening bloodwork tests because I've already been through that process and we came out ok in the end, so I would just enjoy the pregnancy, blissfully unaware if my baby would have special needs or not. Hope that makes sense!