I realized just now that I've never actually spelled out the "association" (not technically a "syndrome"...don't ask me the difference I'm not a doctor) that Trystan has. It's called VACTERL, though I've also seen something called VATER, or sometimes VACTERLS that are basically the same thing. I found a decent definition here. Basically, each letter stands for a symptom in a group that are frequently found together. Trystan does not have all of them. The extra "S" in VACTERLS stands for single-atery umbilical cord...that Trystan most definitely did have.
After doing a little reading, I think we got an easier set of issues than we could have. He has the anal atresia, or imperforate anus, which is the current worst complication. That is the reason that he's had one surgery, will have a minimum of 2 more in the next couple of months, and currently "poops" into a bag on his tummy. He has heart defects--including the ventricular septal defect, which is a heart murmur and will likely close on his own, and an annurism in the sinus of valslva (my doctor sis-in-law had to look up that one), which will require surgery a couple of years from now. He has kidney defects, but they are not currently causing him trouble. He does have a "vertebrae anomolie", but it is nothing severe (he will walk and run and all that, but may have trouble with scoliosis later in life or possibly a tethered cord, which is something else I'll have to research).
He avoided the trachea-esphpogus problems--that is where there is a connection between your esophagus and trachea, which would make it difficult to impossible to eat normally (you would choke or drown on your food as it entered your lungs). He does not have any limb problems--2 hands, 2 feet, correct number of fingers and toes. The prenatal ultrasounds showed that his femurs might be slightly shorter than average compared to the rest of him, but that seemed to come and go between scans, and I'm tempted to assign it strictly to genetics (seriously--my dad is a couple inches taller than me and wears the same inseam on pants...height does not run in either family).
So that's basically the story. This week has seen a Dr and a Dentist visit for me, but no medical visits for Trystan, so there's not much more to update there.
1 comment:
Thanks for sharing. It's very interesting and very humbling to read the details.
I shared this with my Mom (a pediatric ER nurse), and this is what she said:
I took care of a little 2 1/2 year old Monday night who had Vater syndrome.
His heart condition was Tetrology (has had several surgeries), one kidney,
had the TEF (the trachea problem) and the imperforate anus (had 2 or 3
reconstructive surgeries. He was very articulate, interactive and just in
the ER for an ear infection. So please reassure Trystan's parents to hang
in there. It seems overwhelming at the outset and at various stages. This
little guy also had a little brother that was totally fine.
Post a Comment