August 13, 2010

The Idiot's Guide to Owen

I've had a lot of people ask me lately, "So what's wrong with your son?". Because he is such a complex little booger, I decided to type up some cliff notes - The Idiot's Guide to Owen, if you will. I'll have you know that I diagnosed at least three of these things prior to the doctors thanks to my extensive Googling. I'm confident that has earned me some type of honorary doctorate, however their club is pretty exclusive so this will have to serve as my official journal publication.

BIRTHDATE: 11/27/09

Let me start with a example. First, a healthy heart:And then, Owen's heart:Actually, it's not so much as his heart as it is his aorta...which is really a blood vessel that comes off of the heart...ok, scratch that diagram....

1) Vascular Ring - Owen presented with prolonged screaming fits and a tendancy to choke, gasp and gargle while eating. We were told over and over again that he was simply congested, and to run a humidifier. I attributed it to everything from milk intolerance, to disliking the outfit I had picked for him that day (in fact, I literally threw out a red hooded onesie that seemed particularly problematic). Turns out, Old Navy was not at fault - after some pressure on the doctors, a CT scan was ordered which uncovered the REAL culprit. His aorta actually curves the wrong direction (known as a Right Aortic Arch) and has forced some other things, like his trachea and esophagus, to get pushed out of the way. In addition, he was born with an extra blood vessel that was fused together with his aorta, forming a "vascular ring" that was literally squeezing his trachea and esophagus shut. The ring was surgically repaired in Feb 2010 at the tender age of 3 months

What they left alone at the time of that surgery was something called Kommerell's diverticulum which, thanks to the aforementioned ring, is basically large bulge, or balloon, in his aorta that was pressing on his esophagus. I'm guessing that doesn't feel too great and is why he spits out any solid foods as if it were rat poison. This portion of his anatomical discombobulation was surgically repaired on March 28th, 2011.

2) Bicuspid Aortic Valve - This never presented as anything, really, and was only found incidently during another scheduled echo of his heart. Much like the rubber thingys in your garbage disposal, your heart has three leaflets that open and close when blood flows in an out. Owen has only two (well, ok, he HAS three, but two have fused together so really there is one big one and one little one). Also, like the rubber thingys in your drain, stuff can collect on them and cause problems, which leads me to...

3) Aortic Valve Sclerosis - This is the "gunk" that accumulates on heart valves and then calcifies like leftover meatloaf in the back of our refrigerator.  Down the road, gunk build-up may cause his two valves (the big fused one and the little one) to work a little harder than necessary.

4) Heart Murmur - This is a result of the valve mentioned above. It was agreed that this was not significant enough for surgery right now but that they would follow Owen with regular echos to make sure his heart is functioning A.O.K until such time as he needs treatment.

5) VSD (Ventricular Septal Defect) - Otherwise known as a hole in your heart. Owen's VSD is small, and located directly under his aortic valve - which thankfully is a place where it isn't causing much commotion. It will likely never close, but we hope it will never be a cause for concern either.


1) GERD - GastroesomethingIdon'tfeellikespellingout reflux disease. Technically, he's been diagnosed with this twice. The first time, he was held down while a scope was inserted up his nose and down his throat (SO much fun!) and they concluded that since they saw nothing, he must have reflux. I was still working on my honorary doctorate at this point, and therefore did not make the connection between "we found nothing" and "reflux". However, despite this, he was put on a medication for it - which he promptly threw up - over and over again. He was then put on another medication, which cost us not only an arm and a leg, but fingers and toes too. After no obvious improvement, he was taken off the medicine. Fast forward a few weeks, we held him down as they inserted another scope up his nose and down his throat (which he hated just as much as the first time) except at that point, his esophagus is inflammed, meaning he has silent reflux. Bad news: Silent reflux is worse, because instead of spewing it out he swallows it back down, allowing the acid to burn his throat twice. Good news: Less puke stains on my shirt. Back onto the ridiculously expensive medicine...  UPDATE:  As of Jan 2014, we have taken him off of the reflux medicine as it did not appear to be making any improvement and it is not a medicine you are intended to take for an extended period of time.  Off the medicine he is the same as he is off of it, so I'm not 100% sure I'm on board with this diagnosis still.

2) Laryngomalacia - This was found during that same delightful scope. He was presenting with a high-pitched gaspy noise, similar to one that you would make if you accidently sucked a marble down your windpipe (or at least I'm guessing). Due to the fact that he was a baby and didn 't understand the concept of "Please stop screaming even though we have this tube up your nose and down your throat", they had a hard time getting good pictures, but they did get enough to confirm the existence of this defect of his larynx. Basically, the top of his airway collapses slightly when he takes deep breaths in, causing a squeaking noise. This is compounded by the GERD, since the acid spew he coughs up aggravates his larynx even further. I've been assured that he will likely outgrow both of these things.   
UPDATE:  As of Jan 2014, this defect appears to have resolved itself.  Woot!

3)  Tracheobronchomalacia - Whew, that's a tough one, right?  It is believed that this rare abnormality is because of the vascular ring that compromised the development of his trachea during fetus-hood.  His airway is not as strong as most, so if airway gunk (not to be confused with calcified heart gunk) gets down into his trachea and lungs, it is a struggle for him to clear it out - sort of like using a spoon to bail a sinking boat.

3) Severe Food Aversion and/or Eating Disorder and/or something else - Owen has not ever consumed anything beyond a thin puree consistency. At over 3 years old he still relies heavily on medical formula to meet his nutritional needs. Prior to his second surgery, we assumed that part of his difficulty eating was because of the diverticulum blocking his esophagus. Post-surgery, he actually started taking an interest in real foods like granola bars, mashed potatoes, etc. But suddenly, that stopped, and now we are back to a daily struggle to get him to consume more than a few ounces of purees - let alone table foods like a normal kid his age should be doing. We have made visits to the University of Iowa Children's Hospital, Children's Memorial Hospital in Chicago, and the Mayo Clinic, and Owen's case is just so unusual that they have nothing left to offer us except to keep an eye on him and hope that he overcomes these obstacles on his own.   
UPDATE:  I'm happy to say that as of Jan 2014 his eating has drastically improved.  He now eats some solid foods and no longer requires the medical formula we came to know and hate.  It's still an uphill battle most days but his openness to eating a more varied diet is improving daily.

4) PANDAS - This stands for "pediatric autoimmune neurological disorder associated with strep".  Around his 3rd birthday, Owen started showing some autistic characteristics.  He repeated things often and would become violently upset if you didn't repeat them back, he developed some strong OCD tendencies such as lining up toys and visiting the bathroom so many times that we may as well have just set up a tent in there.  He also had a motor tic of eye blinking which started to become so prominent that he did it every 3-4 seconds, all day long.  A visit to the pediatrician regarding these tics incidentally found him to have completely symptom-less strep throat - because, you know, nothing with Owen can be normal and straightforward.  A round of antibiotics and all of his behaviors disappeared.  Confused and intrigued, we visited a specialist who diagnosed him with PANDAS, saying that the strep bacteria actually triggers the bodies own immune system to attack part of the brain which is responsible for - you guessed it - motor and speech behavior.  So basically, his inflamed brain made him do it.

5) Genetics (yet to be determined) - This year, Owen was looked at by a team of geneticists at Mayo Clinic. He has a significant history for having some sort of genetic disorder or mutation, but nothing they could pin down. His basic genetic array test came back free of deletions or duplications, which essentially stunned the genetics team (and let me tell you, that's hard to do!).  So, they sent us away and told us to come back in a few years once more medical advances in genetics had been made so they could reevaluate him.  Yes, really.

So there you have Owen in a nutshell. There are so many people in the world who struggle with disease, deformities, and defects on a daily basis - and while Owen may be a complicated thing on the inside, he's a normal, happy boy otherwise and for that I consider us to be among the lucky. All the doctors, all the hospitals, all the office visits and phone calls haven't changed his smile one bit. Flesh, bone, and steel!


  1. And yet, despite all of this, he is such a happy baby! You have nerves of steel for being able to handle all of his medical adventures so well!

  2. Wow, I didn't realize. You guys have gone through a lot and I bet mentally exhausted. Owen is a real trooper considering all the tests. He is so adorable. I see a lot of Travis in the above picture. He has a great reassuring smile that says "Hey I'm okay, don't worry".

  3. I have battled the reflux stuff...and legitimately snorted when you said the onesie was at fault...after a while of being blown off you start to really believe this...especially after no daughter was 50x worse at night...I feel for ya!

    I also understand almost all of your medical jargon of the oldest girl has had corrective surgery for an ASD, VSD, and mitral valve malformation...

    No fun!

    I send understanding ((hugs))!!

    I hope things get good and boring for that baby!!


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