VACTERL association (syndrome)--medical question, no advice asked

Factual Questions
1

I’m posting a lot of background here. Some of it will be TMI for the squeamish. It’s too much for me, but I don’t have any choice.

VACTERL association is a bunch of birth defects that occur well outside what could be expected by random combination.

(V) - Vertebrae problems - abnormally formed vertebrae, tethered spinal cord, extra ribs, missing ribs and tailbone, etc.
(A) - Anal anomalies/rectal problems - no anal opening
© - Cardiac problems - minor to massive heart problems
(T) - Trachea (windpipe) - improper connections between trachea and esophagus
(E) - Esophagus - part of the esophagus connecting the mouth and stomach is missing
® - Renal (kidney) - abnormal kidney(s)
(L) - Limb - various hand, feet and leg problems, missing bone structures are common

(from [rul=http://www.vacterlnetwork.org/about.html]VACTERL Network)

My daughter has it. She has V–a hemi-vertebra, A–imperforate anus, C–heart murmur, R–displaced kidney, and L–polydactylity.

She also has a cleft lip, which I suspect might be listed in the T/E category, even tho’ it’s not strictly either T or E.

Here’s my question: It appears that she also has something that may or may not be visual apraxia–difficulty drawing what she sees is the closest I can describe it, non-medically speaking. I’m talking having trouble drawing a “T” for instance. Could that be part of the “association”? I’ve searched a bunch of VACTERL sites, and very little is known about it, but no one has mentioned learning disorders in association with VACTERL that I can find.

Dunno why it matters, since dealing with each problem in the association individually is the only available treatment. But I’m curious. It seems wildly unlikely that she would have yet another birth defect that WASN’T part of the association.

Not looking for sympathy or anything here–our family motto is “We’ll Deal With It”–and she is doing fine now with the help of the wondr’us people at Children’s Hospital.

2

A lot depends on how old your daughter is. IIRC, children tend to progress in drawing skills from making slashed lines (arm back and forth) to circles (around and around) to triangles and squares and on to more complex shapes. Children begin to comprehend that they can make a mark with a pencil or pen at around 18 months and progress from there. I would expect an average child to be able to draw a T on request by three or four years old. Children don’t really draw to represent reality until years later, and they literally can’t move past symbolic representation to truly realistic drawing until after age 13 or so, due to stages of brain development.

Also, even if your daughter is significantly older than the expected age of mastery, it may not be a mental deficit. With the physical issues she faces, including polydactily, she simply may not have the physical resources at this point to draw what she can mentally picture.

A physical therapist or neurologist would be able to shine a great deal more light on this matter.

3

I should have included a little more background, I see.

My daughter is 5 and 1/2 years old. The lip, extra thumb, and anal problems have all been repaired surgically. The heart murmur is benign, the misplaced kidney does not seem to have any medical effect. The thumb joint on her right hand, where the extra digit was, is a bit funky, but otherwise she’s quite healthy.

At the cleft lip/palate clinic, one of the doctors used to work in a different department and noticed that my girl had some difficulty moving the pen. That’s where the visual apraxia suggestion (firmly NOT a diagnosis) came from.

We plan to get her back to Children’s for a set of tests and something more resembling a diagnosis, and we’ll deal with the problem then. We have a friend whose daughter has verbal apraxis–charming, plenty smart, great coordination, but just can’t get the words out. This is quite similar–she can see the letters, reads them easily, but can’t make the pen go the right direction.

So my question is really just about the VACTERL Association. It seems so unlikely that the visual/coordination problem could be unrelated to VACTERL, but I haven’t found any suggestion from my research on the Web that it is related–I’m hoping someone on the Dope might have better info. Or better search skills.

Or maybe I should suggest that her doctor write it up. :slight_smile:

4

How old is you daughter?

Does she have developmental and or physical delays?

When the kids are babies, there are more and more closely tracked developmental milestone to be met. In my experience, as the kids get older there are fewer milestones and looser timeframes to meet them in. You daughter, if she is like my son, may have mixed developmental and physical issues.

Because of my son’s early difficulties, I follow him pretty closely. Noone but me was worried that he could not ride a bike at 9. He just learned how about 1-2 weeks ago- YAY- but I’ve spent many a spring running along side him up and down the street.

He seems to meet his milestones anywhere from on-time to two-years delayed in my estimation. I saw my son’s inability to ride a bike as a mixed gross motor and developmental delay, but can see that others may not call it such because even if bike riding is a milestone, there is probably a large timeframe for meeting it.

Another example is that his handwriting is terrible (messy, poorly constructed, starts out too big and shrinks, too easliy fatigued, can’t stay in/on/between the lines, can only draw stick figures). He gets fine motor therapy at school. Of the above problems with his handwriting, the stick-figures only is probably developmental, while all the rest are likely fine motor.

Also, I understand that therapists allow ‘hospital time’ to be deducted from develomental milestone time frames. For example if a kid was in the hospital for two months, you can add two months to the time frame allowed to meet any particular milestone.