When Evan was born, the geneticist talked to us about VATER/VACTERL Association. It's called an association, rather than a syndrome because while all of the birth defects are linked, it is still unknown which genes or sets of genes cause these birth defects to occur. Each child with this condition can be truly unique, with defects being different from any other child. At present this condition is treated after birth with issues being approached one at a time. So, when Evan was born the TEF/EA (the TE in the acronym) and an extra thumb (L for limb anomalies), they immediately checked his vertebrae (V), his anus (A), his heart (C for cardiac), his kidneys (R for renal). While they didn't find any glaring issues with his vertebrae at birth, we knew he was at risk for scoliosis. His pediatrician noticed some curvature about 3 years ago and we've been seeing an orthopedic surgeon every year for a check. Last year the degree of curvature was 13 degrees. Of course I have worried about this-the last thing my kid needs is to wear a brace with everything else he's gone through. So, our yearly check was Thursday. Evan went off for his xrays and then we waited for the doctor to come in. When he did, he gave us some wonderful news. This year there is NO measurable amount of curvature. None. His spine is straight. We don't have to go back for two years and then if no signs of any new curvature, then maybe once when he's a teenager. He told us how to look at his spine and he showed us that because Evan had a thoracotomy when his esophagus was repaired, the top of his back can look like his back is curved. He also told Evan to make sure he tells us if his back ever hurts. I was and am so incredibly happy. And no, believe it or not, I didn't cry!
More on VATER/VACTERL:
www.cincinnatichildrens.org/health/info/heart/diagnose/vacterl.htm?GRAB_ID=30434850\&EXTRA_ARG=\&HOST_ID=1\&PAGE_ID=743\&HIWORD=VATER%2B
1 comment:
Awesome new blog layout and more importantly....GREAT NEWS!!!!
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