Thursday, October 28, 2010


It always interests me to discover the questions people have about us, about Piper, and about Down syndrome in general.  I would much rather people ask questions and get the right answers than sit and wonder, or have incomplete/inaccurate answers.

So, on that note, I’ve had a couple of comments lately that pertain to Piper and her surgeries.  Thought I’d clear the air and answer on here, too.  Chances are someone else has had the same questions!

The one that’s come up a couple times lately is if ALL of Piper’s problems are caused by her having Down syndrome.

The biggest thing Piper has faced was her prematurity.  I’m fairly certain that her being a preemie, not strictly being born with Ds, was the cause of some of her sensory issues (all of which have gone away at this point, but the most obvious was her ability to OVER-stimulate easily), a lot of her difficulty in growing, and her difficulty learning to feed…  However, she was NOT born early because of the Ds.  Fact of the matter is that no one knows WHY she was failing in utero- it was likely just a fluke.  Not all babies born with Ds are premature (although many are born preterm- after 36 weeks- and lots seem to be born by 38 weeks).  Because of her prematurity, we get to adjust her skills by two months to determine any delays, plan goals, and know what to work on.  In other words, instead of looking at her like she’s 17 months, we look at her like she’s 15 months.  In the first two years (at two, the adjustments stop) those two months can make a huge difference!

Next are Piper’s surgeries.  She’s had three major ones:  one at birth to correct the Duodenal Atresia (where the intestine and the stomach are not attached correctly), one at 9 months to have her gallbladder removed, and most recently at 16 months to correct airway issues.

Duodenal Atresia is a marker for Down syndrome.  We do blame that on the Ds.  If she didn’t have Ds, she’d likely not have had DA.

The gallbladder was a side-effect of being a preemie and her DA.  While the DA site was healing, she wasn’t allowed any oral feeds.  And because was so teeny, and a preemie, they took a long time to get up to full oral feeds.  So for a period of weeks, she was fed purely by IV nutrition.  In some kids, the TPN (Total Parenatal Nutrition) causes gallstones.  And that’s what happened with Piper.  They started causing problems when she was about 3 1/2 months old, and by Christmas, I was convinced that we needed to have it removed.  Turns out to be a wonderful decision- she’s done a lot better, in lots of areas, since then.

Finally, the airway issues.  This, again, was not caused by Ds.  Kids with Ds are more prone to have vascular issues of one kind or another, and that’s what they thought was going on at first.  But when they looked at her heart, and all the arteries and veins involved, they could find NO structural abnormalities.  Essentially, it was her TRACHEA that’s misplaced slightly further to the right than it should be.  And EXACTLY what Piper has is VERY rare, for any person.  Certainly not something that’s associated with Ds.  Not that it made it ANY more fun to deal with…

I really hope that any other questions people have they feel free to ask.  Sometimes I feel like people are afraid that they’ll offend us if they bring something up.  Certainly not the case!  Please feel free to ask away!

I think that Ds can appear a lot more scary than it really is, and than it should be.  I don’t want Piper’s experiences to scare people off.  Truth be told, outside of (despite?) these admittedly big things, Piper does very well for herself.  Ds is big, yes.  But scary?  Something you can’t deal with?  Absolutely not.  Besides, who wouldn’t want something this cute???


  1. I love this entry! I've always said the scariest thing about my kids were their tickers...not their chromosomes.

    And I love that there are, quite frankly, two explanations for what happens medically at your house (and mine, too.) It either happens because she has Down syndrome or it happens because she's Piper. It's always one of the two. And the weirder the diagnosis, the more likely it is to be attributed to the latter. :0)

  2. Thanks Aimme - always good to answer questions. I never thought about most of these, but it was good to read. I don't know but Daniel had a thing called a floppy-larics (thing at the back of the throat). He used to stop breathing. It might have been similar - but he grew out of it. Thanks - can't wait to see her next year!

  3. She is lovely and you do an amazing job!! Preemie issues are their own set of issues, I know a bit about that. "Ds" is new to me and I thank you for sharing and allowing people to learn with you - truth be told we all come with our own sets of things, some common to others and some are just because we are who we are. I wish you all the world!!

  4. Great post and a great explanation that just because one of our kids has something it isn't always tied to that extra chromosome.

  5. This post was very interesting, I wasnt to sure what exactly Pipers issues were and it was neat to learn a little about her! And she certainly IS very cute :)

  6. Cute indeed! For us the health issues have been much scarier than the effects of the Ds. And you know, the whole parenting thing in and of itself can be scary. She is darling!