Does your child have Agenesis of the Corpus Callosum?
Do you have a loved one or family member with ACC?
This is a serious and very important message regarding
the heart!
20% of kids who have ACC have heart problems.
That means:
1 out of every 5 kids with ACC has a heart condition.
Read what Dr. Elliott Sherr, an expert on ACC, says:
"Almost 1/4 of the kids had heart problems. Now these are not innocent murmurs that then go away. These are actually kids who have real heart disease.
So my recommendation on any child with ACC is that they get a comprehensive heart evaluation."
Who is Dr. Sherr?
Dr. Elliott Sherr is a Pediatric Neurologist at
University of California, San Francisco (UCSF). Dr. Sherr is highly knowledgeable and an expert on Agenesis of the Corpus Callosum. He sees many patients, children, who have ACC and Dr. Sherr is highly respected and well-liked by parents. Dr. Sherr is on the Board of the National
Organization for Disorders of the Corpus Callosum (NODCC) and he speaks at the annual Conferences.
A few of the congenital heart conditions seen with ACC are:
Atrial Septal Defect (ASD)
Ventricular Septal Defect (VSD)
Coarctation of the Aorta
Tetralogy of Fallot
Hypoplastic Left Heart Syndrome (HLHS)
The fact that 20% of kids with ACC have a heart
condition is not limited to just babies or very young
children with ACC. It can affect older kids with ACC, too.
See for yourself. I came across the parent of a teenage child
with partial ACC who shares a very eye-opening story about
her daughter's heart.
Jody, parent of 15-year-old child, said:
"My 15 year old daughter, Jurie, has Partial Agenesis of the Corpus Callosum (P-ACC) with dilated lateral ventricles of the occipital and temproal horns. Due to the dilated lateral ventricles, she has hydrocephalus which fills the ventricles. She doesn't need a shunt because there is no extra pressure from the fluid. She has a lot of sensory issues with this condition, as well as, dyspraxia symptoms. I homeschool her because she had difficulty learning in a classroom full of kids.
I have four children, and Jurie is the onlly one on mine who has P-ACC. The doctor, however, ordered the genetic testing, and Jurie's was not genetic. Jurie was also born with an Atrial Septal Defect, which is a hole in the heart. We jjust found out that she had the hole less than two months ago [at 15 years of age] because no doctor had ever heard the heart murmur. This was because the hole was rather large, 19 mm, and the blood flow was large through the hole. She had the hole repaired on April 15 using a heart catheterization. She has strabismus/crossing of the eye and moderate scoliosis, also. She suffered from migraines for years, but by fixing the heart this has taken care of the migraines."
Jody's child was not diagnosed with partial ACC until she was 14 years old.
When a person is diagnosed with Agenesis of the Corpus
Callosum, they are at risk for having midline defects.
One of those possible midline defects includes the heart.
A person who has ACC (a congenital birth defect) is at
risk to possibly have a congenital heart defect.
Congenital means they are born with it.
My own child, Matthew, who is 17 years of age, who has
complete ACC, was sent to a Pediatric Cardiologist when
he was an infant, after he was diagnosed with ACC.
He had a comprehensive examination and he also had tests
done when he was a baby, which ruled out a heart defect.
Possible tests might include:
echocardiogram
electrocardiogram (EKG)
The medical tests (for my child) were done right in the
doctor's office and I received the results of the tests
immediately.
If my child, Matthew, had not been seen by a Pediatric
Cardiologist and had not been tested when he was a baby
to rule out a heart defect, I would definitely schedule
an appointment for my child now to have a comprehensive
heart evaluation by a Pediatric Cardiologist, even at
his age of 17 years old.
Please be aware that there are some congenital heart
defects (present at birth) that may remain unrecognized
until adulthood.
As a parent, myself, of a child with ACC, this is a message
from my ♥ heart to each one of you reading this who have a
child, a family member or a loved one who has Agenesis of the Corpus Callosum.
Please be advised the National Organization for Disorders of the Corpus Callosum (NODCC) website states:
"Twenty percent (20%) of patients with DCC have cardiac anomalies and therefore all DCC patients should have a careful cardiac evaluation."
DCC=Disorder of the Corpus Callosum
Note: Dr. Sherr's quote about ACC and heart defects is found at Dr. Sherr Talks about ACC
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