Hi to All:
My name is Christina and I have twins, Hailey and Hannah, who were born with multiple health conditions including ACC. They also have or had when born FEVR (rare genetic eye condition that could lead to blindness), borderline hydrocephalus, hydronephrosis, a VSD, and GERD. I am wondering if anyone in this group has multiple health conditions with ACC or has children with multiple health conditions including ACC. Just curious if ACC has been linked with other health issues. Thanks, Christina
Hi christina,
My son also has multiple health conditions. He is 19 months old so we are in the beginning stages of genetic testing. He has CACC along with Tetrology of Fallot (heart condition) reflux of the kidneys and a lazy eye. The Geneticist we’re working with has said she knows he has a syndrome we just have to figure out which one it is. Whatever it is is rare. Considering everything he has to overcome he is doing very well. He is constantly smiling and is one of the happiest little guys you will ever meet. I don’t know how common it is for a child with ACC to have multiple conditions. I’ve been looking to meet another parent with a child that has ACC and a heart condition. Sheila
My daughter has C-ACC, and has had two open heart surgeries for her Tetralogy of Fallot. We have notived that she has had many mid-line birth defects, including (but not limited to)
*her frendulumn was attached all the way to the tip of her tongue when born.
*her tear ducts were clogged for the first 9 months of her life
*Brain defect (C-ACC)
*Heart defect (TOF)
*Tethered spinal chord
*severe reflux
*collapsed soft pallate
*???
We think she might have Optiz Syndrome. Below is the abstract:
General Discussion
Opitz G/BBB Syndrome or Opitz Syndrome is a genetic disorder that may be evident at birth. The syndrome may be characterized by distinctive malformations of the head and facial (craniofacial) area, including widely set eyes (ocular hypertelorism); an abnormal groove in the upper lip (cleft lip); incomplete closure of the roof of the mouth (cleft palate); upwardly or downwardly slanting eyelid folds (palpebral fissures); vertical skin folds that may cover the eyes’ inner corners (epicanthal folds); or a wide, flat nasal bridge. In addition, in affected males, abnormalities typically include failure of the testes to descend into the scrotum (cryptorchidism), clefting of the scrotum (bifid scrotum), or abnormal placement of the urinary opening (meatus) on the underside of the penis (hypospadias). Affected individuals may also have malformations of the windpipe (trachea) and the larynx, which connects the trachea and the throat (pharynx); underdevelopment of the lungs (pulmonary hypoplasia); and associated swallowing and breathing difficulties. Opitz Syndrome may also be characterized by additional abnormalities, including partial or complete closure of the anal opening (imperforate anus); underdevelopment or absence of the thick band of nerve fibers that joins the two hemispheres of the brain (hypoplasia or agenesis of the corpus callosum); kidney (renal) abnormalities; heart (cardiac) defects; or mental retardation.
Rafi has a number of issues too, but no "syndrome " has been found that fits. He has velopharyngeal insuffficiency ( which it took docs 10 yrs to find, they never did, it was a SLP who finally figured it out) and is having surgery next month to correct this. In addition he has Juvenile idiopathic scoliosis and will be getting a back brace at the end of this month for it. You might look into having your child evaluated for this, as the other docs Rafi was seeing kept telling us we could wait for an eval and when we got to the Orthopedics folks they told us we should not have waited. How annoying.
Jane in MN
ldybth agenesiscc-cpt3265@lists.careplace.com wrote:
Hi
I have a 22 month old daughter who has partial ACC, epilepsy, global development delay, a visual impairment. We are guessing most of it is related to P-ACC as they are listed as side effects. Abbey had an MRI at 5 weeks (resulting after an ultrasound at 36weeks found a bit of fluid on the brain). The result obviously being agensis of the corpus collosum. Abbey is not crawling, she doesn’t have any interest but loves to stand (with assistance), will stand in a standing frame and is just starting to take steps. Her epilepsy is under control with medication. She started having seizures at 6 months of age, just after surgery on her skull as her sagital suture had fused together to early. She has since had another bout of surgery as it wasn’t properly fixed the first time. Everyone seems to thing they did something to her during surgery because since the second surgery she is doing so well.
Anyway better not keep you all.
Tash
Hi Tash,
I do remember how terribly hard it was not to know
what will happen, but the truth is probably nobody
really does know.
Our son is now 19 and will finish school this year. I
just got home from a speech club presentation at the
high school. Many of the students were performing
skits and one act plays, my son’s special needs class
did a Reader’s Theater (they read from scripts)
presentation of "Mike Mulligan and his Steam Shovel."
It is clear that he is at a very different level than
his peers, I would guess he act about like an 8 year
old. Sometimes I still feel sorry for myself because I
don’t see the freedom ahead for myself that most
people would be anticipating at almost 50, but I am
also profoundly grateful for the understanding of the
true value of things that I have gained from raising
this son. How could anything like social status or
fancy cars ever matter to me again? What matters is
love and the chance we are given to express it. I do
worry about his future, but really not much more than
I do that of his brother who is now preparing for
grad school. The world is kind of a scary place right
now. Love each of your children in the way that they
need. Try not to agonize about the future. I wish I
could get back all the time I spent fretting and just
use it to enjoy the children I was given.
Best wishes,
Kathy
— nhrabar agenesiscc-cpt3265@lists.careplace.com
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text below this line will be cut off in your replyHi
I have a 22 month old daughter who has partial ACC,
epilepsy, global development delay, a visual
impairment. We are guessing most of it is related
to P-ACC as they are listed as side effects. Abbey
had an MRI at 5 weeks (resulting after an ultrasound
at 36weeks found a bit of fluid on the brain). The
result obviously being agensis of the corpus
collosum. Abbey is not crawling, she doesn’t have
any interest but loves to stand (with assistance),
will stand in a standing frame and is just starting
to take steps. Her epilepsy is under control with
medication. She started having seizures at 6 months
of age, just after surgery on her skull as her
sagital suture had fused together to early. She has
since had another bout of surgery as it wasn’t
properly fixed the first time. Everyone seems to
thing they did something to her during surgery
because since the second surgery she is doing so
well.Anyway better not keep you all.
Tash__
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