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24HourForums.com > Supported Forums > Britt's Child Education > Charge Syndrom

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MrsMe
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 Posted: 05:25 am

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Just wondering if you know anything about Charge Syndrom?

Or if anyone who reads this forum has any info they would like to share about Charge??:D

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24HourNut
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 Posted: 04:15 pm

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Hi MrsMe!  I never heard of Charge Syndrome.  Had to look it up.  Found some info HERE.

A part is below...

 

CHARGE Syndrome
by Kate Moss, Family Training Specialist, TSBVI Deafblind Outreach

based on information from CHARGE Syndrome: A Booklet for Families

A \"syndrome\" is described as a recognizable pattern of birth defects. One of the more complex syndromes that can result in both vision and hearing loss is CHARGE Syndrome. Children diagnosed with CHARGE most commonly have:
  • Coloboma of the eye (a cleft or keyhole-shaped defect occurring in one or more areas of the eye including the iris, retina, or disc)
  • Heart defect
  • Atresia of the choanae (closure of the passages from the back of the nose to the throat which allow breathing through the nose)
  • Retardation of growth and/or development
  • Genital Hypoplasia (this can include in boys a small penis, undescended testicles, no urethral opening at the end of the penis and in girls in can include a small or absent labia)
  • Ear malformations
The name \"CHARGE\" comes from the first letter of each of these defects or anomalies. Children with CHARGE may have additional problems. Some of these problems include:
  • Facial paralysis or palsy
  • Central Nervous System disorders which may include microcephaly, seizures, apnea, and central processing problems including a central hearing loss.
  • Pituitary abnormalities
  • Swallowing difficulties
  • Urinary tract malformations such as abnormal kidney shape or location, backup of urine from the bladder into the kidney (reflux), posterior urethral valves.
  • Cleft lip and/or palate
  • DeGeorge sequence (congenital absence of the thymos and parathroid glands)
  • CHARGE facial features (square shape of the face and head, flat cheekbones, facial asymmetry, wide nose with a high bridge, and unusual ears)
  • Omphalocele (failure of the abdominal wall to close properly around the umbilical cord, intestines may be outside of the body)
  • Tracheo-esophageal fistula (an abnormal connection between the trachea or wind pipe and the esophagus or food pipe)
  • Esophageal atresia (the esophagus or food pipe ends in a pouch instead of connecting to the stomach)
There is no laboratory test that can diagnose CHARGE Syndrome. Usually the diagnosis is made because of the presence of a number of these typically unrelated anomalies. Because of this, the diagnosis is usually made by a team of specialists, based on the specific combination of features seen in the child. These features vary greatly from one child to another. For this reason, a diagnosis of CHARGE Syndrome may be a long time coming.

The cause of CHARGE is not known. It is not known to be related to illness, exposure to drugs or alcohol during pregnancy, and typically it does not occur to more than one person in a family. It is very rare, and cannot be predicted. It is important however, to discuss risks for passing CHARGE Syndrome to future generations with a trained geneticist.

Children with CHARGE require a great deal of medical management. There are often numerous surgeries to repair heart defects, choanal atresia, the gastrointestinal tract, the esophagus, cleft lip or palate, etc. Although many of these procedures are done when the child is a newborn, some of the less life-threatening problems may not appear until later or may have to wait until later in the life of the child to be addressed.

This results in a very difficult time for the child and the family emotionally, physically, and financially. It is easy to neglect to give time or energy to a spouse (or other children) when such incredible demands are being made of the parents. These families have great need for support in finding medical resources, financial resources, and respite resources. Often times the hospital social worker can help families in locating these resources locally. However, it is also a good idea to contact the CHARGE Syndrome Foundation to help the family learn more about the specific condition and what other families have done in similar situations. The address for this organization follows:



More is in the link I provided at the top.









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Kimber767
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 Posted: 09:50 pm

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I've never heard of Charge Syndorm.

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 Posted: 01:43 am

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Dear friend,

Some years ago I had a case that involved a 6 month old child with what was then called C.H.A.R.G.E. Association. This condition was so rare back then that it vas not accepted as a full blown syndrome by the medical community.  I see Frank already provided some specifics, so I won't repeat.

The child I observed was very delightful for many reasons but most notable was the extra "fold" on the top of each ear that made her look like a miniature "Spock"(pointed ears). I remember thinking at the time that conditions like C.H.A.R.G.E. Association may possibly be the foundations for such old stories about "sprites", "leprechauns" and such. Being born, raised and generally hidden away from prying eyes where an occasioned passer-by gets a glimpse of them with their unusual clothing and pointy ears might lead some (like me) unfamiliar with such to speculate about where these little people come from.

When my children were very young and had nightmares about monsters hiding under the bed or in the closet I used to get everyone out of bed and with flashlights a-blaz-zing try to capture those monsters because I told my kids that if that monster got caught - the monster had to give them a present. Yes, I lied to my kids. The kids never caught a monster but they had fun running around with dad and mom a 2AM lookin and, and they stopped having nightmares about monsters under their beds.

Alack, most C.H.A.R.G.E. Syndrome babies are born blind, or deaf, or much, much worst, however they are still beautiful to me. :O)

What say you?

Free :heartbeat: man

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