Hi, welcome to my site. My main goal for this site is to help others who have been diagnosed with similar issues, and steer
them to places where they can find support. I've edited this site heavily from the past in order to help protect my child's
privacy in this age of the Google search :)
Our youngest child was born in 2000 with VACTERLS association and features of sacral agenesis/caudal regression syndrome,
a rare combination of congenital birth defects. His complications included: smaller left pelvis, hemisacrum (missing left
half), hemivertebrae and L5 anomalies, mild long segment scoliosis, extra left rib, low imperforate anus, single right kidney,
urological issues, smaller underdeveloped left leg with equinovarus club foot, tethered spinal cord, PDA (closed on its own)
GI reflux, delayed gastric emptying/gastroparesis and mild swallowing dysphagia.
It was overwhelming at first, but we have adjusted well, thanks in part to a wonderful family. Our son is now a happy, healthy
teen with a love of science and videogames. We were blessed in that all his problems are mostly maintenance issues and as
long as we keep on top of his care, they do not affect his overall health. Despite many surgeries, and countless other assorted
procedures and doctor visits, he is the sweetest and happiest little camper. Except, of course, when his big brother is torturing
him, which is pretty often. He does have physical limitations, but we work around them to the best of our abilities.
As a brief overview, within the first year, he has had surgeries to correct the imperforate anus, tethered cord, urological
anomalies and club foot. He also had ear tubes put it due to chronic ear infections. At age three, he had a tonsillectomy/adenoidectomy.
His scoliosis continued to progress slowly until he hit a growth spurt at age 5/6, so he had a spinal fusion done to stabilize
his spine and pelvic junction. At age 11 he had a second clubfoot surgery and at age 12 he had leg lengthening with a Taylor
Spatial fixator and gained 6.3cm of new bone on his left leg.
Since his birth, we have been through a lot, and have learned to appreciate the things that are truly important in life -
namely family and health. We are continually amazed at his strength of spirit, and the way he overcomes any obstacle put
in his path. We also feel truly blessed to have such a wonderful family, which has supported us so much since his birth.
If anyone wishes to share their experiences, or needs advice on similar problems or just some moral support, feel free to
email me at Conni60640@aol.com.
What's New? Update as of 3/14/12
Wow, seems I forgot to update since last May... well, I was a bit overwhelmed with the whole "fixator thing" and forgot.
Anyway, most of you probably know that the whole process overall went well, we got 6.3cm of growth, the fixator came off on
6/5/12, Billy wore a cast for about 5 weeks to let the pin holes in the bone fill in, and then started phyiscal therapy to
help get him back to walking. That was a bit more of a process than I had anticipated, his knee got quite stiff while
in the cast, but by late September he "graduated" from PT. He did use his wheelchair in school in the begininning since
his school is huge and distance walking tired him out a lot until he built up some stamina again and now only needs it for
emergencies and really long distance walking, just like prior to surgery :)
After the dust of that settled down, we had issues with arm pain (it seems like his nerves running down the middle of
his arms got inflammed from all the wheelchair/crutch use during the fixator treatment) that caused hand numbness. We
tried some PT for that, but it only aggravated the issue, and had an OT evaluation at the hospital. They confirmed what
we always suspected, that Billy's thumbs, hands and wrists are hyper-mobile (loose at the joints) and that his grip strength
is about half of what is typical for his age. This has led to issues in school, as he is required to write more in the
upper grades, and we are working with the school to find the best possible solutions for a successful education. Thankfully,
the transition to the new middle school team has been successful and they seem as concerned about helping Billy do his best
as I could possibly hope for!
Another thing that popped up as a potential problem in November 2012 was Billy's fingernails and toenails being
very mildly clubbed. This is usually caused by some sort of pulmonary or cardiac issue not allowing enough oxygen
in the blood to the extremeties, so this (along with some issues of not being able to breathe while laying flat) sparked off
a whole laundry list of tests, scans, CTs, xrays, sleep study, etc to make sure there was no underlying problem that we needed
to address. Thankfully, nothing turned up to alarm us, and some Nasonex allergy spray to help ease inflammation in his
nasal passages has helped his breathing.
Now that the testing is all done, we are finally able to relax medically for what seems like the first time since about
August of 2011, and take some much needed "down time" mentally from all that... Fingers crossed that the rest of 2013 is nice
Peace and love to all of you!