When you are driving your car, and there's a clanking sound coming from the engine, panic strikes. You think through all the worst and most expensive possibilities. You fear the time that it will take to repair your car, and whether or not it will even be fixable. When you finally force yourself to face your fears, you take the car to your favorite mechanic and hold your breath as you wait for diagnostics to come back.
This is just like waiting for a medical diagnosis for your child. Tests are run, professionals are consulted, and when a decision is reached, your next breath remains caught in your throat while you wait for the label.
I've now experienced this process twice in the three years that I've been a parent.
With Nasko, we were searching for a label. We had taken him to "mechanic" after "mechanic" to learn what might be causing his tics. The label of Tourette's Syndrome was not surprising to us, as we had done much of our own research. We felt like someone was just telling us that we'd need to change our spark plugs twice as often as any other car owner - a fact we had wondered about and assumed to be true. This diagnosis appeared to have minimal impact and the car's life expectancy didn't change at all.
As I mentioned in the last blog post, we have now received a diagnosis for E and all his complications as well.
The diagnosis was given during our time at the International Adoption Clinic at St. Louis Children's Hospital. I wasn't expecting a diagnosis at all. We had just come to believe that E has some mixed up insides that were a result of random birth defects. I hardly had time for my breath to be caught in my throat, as the doctor nonchalantly mentioned having arrived at a conclusion for a medical label.
E's Diagnosis: VACTERL Association.
The doctor then went on to describe how they came to this conclusion, but I wasn't listening very well. Questions about the future maintenance of the car whirled through my head. Would he just require extra tune-ups? Does the engine need rebuilt? How long will the car last?
Since our appointment, I've had time to read more about VACTERL Association. I agree with the diagnosis, as E has most of the symptoms of this association. I've also spent time reading stories of people who have lived full and wonderful lives with this condition.
Here's a little of what I've learned about VACTERL Association (see Wikipedia for more info):
An association (rather than a syndrome) is a number of symptoms that are commonly seen together, but are not always ALL present. In this association, VACTERL is an acronym for multiple symptoms commonly seen in these children.
V - Vertebrae defects
A - Anal defects
C - Cardiac defects
TE - Tracheo-Esophageal Fistula defects
R - Renal/Kidney defects
L - Limb defects
To be diagnosed with this syndrome, a child has to possess at least three of the defects.
Here's how those shake out in E's life:
V - Vertebrae defects (E has two hemi-vertebrae which have caused severe scoliosis.)
A - Anal defects (Information withheld to protect his privacy.)
C - Cardiac defects (E was found to have his main artery traveling down the wrong side of his body. He also has a heart murmur.)
TE - Tracheo-Esophageal Fistula defects (Nothing yet! Praise Jesus!)
R - Renal/Kidney defects (A sonogram recently showed that E has one large kidney shaped like a horseshoe instead of two separate kidneys.)
L - Limb defects (E had hip displasia at birth. His left leg is shorter and smaller than his right leg. His left foot has some parts that aren't completely formed - like one toe, etc.)
I have also learned that kids with VACTERL Association are typically small and have difficulty gaining weight. (Uh, hello my kid! He eats like a horse and hasn't gained a pound since coming home!) These kids are known to have normal development and typical cognitive skills though.
Now that we have a diagnosis and have learned more about what is under the hood, we know there's a lot of maintenance to be done. The life expectancies of kids with VACTERL Association vary, depending on the severity of each child's defects. The key to long lives for these kids, is monitoring their issues and having good specialists to determine when surgeries are necessary. We're thankful to have a proactive team of doctors in St. Louis.
Most children who don't survive this condition pass away at birth because certain conditions go unnoticed. By the grace of God, the major, life-altering issues were discovered when E was born. The minor, non life-threatening complications may have gone unnoticed until now, but God's provision kept him alive.
While the clunks under the hood are concerning and a cause for alarm, it's reassuring to remember that we know that Master Mechanic, the Ultimate Healer, and the Great Physician.