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Walk On Foundation Inc.

Providing Medical Needs


Understanding OEIS

Posted by Joshua Richard on September 20, 2011 at 1:35 PM

Walk On Foundation Inc. accepts numerous applications every month of children dealing with common illnesses, and or diseases.   However, we also assist numerous children, adults and families with illnesses and/or diseases that we are not familiar with.   Therefore, we would like to launch our area called Medical Messages.  This area will be used to discuss different medical issues that we may not be familiar with.

Meet 8 month old Trennor.  He is a local Danville, PA baby.  Ain't he just adorable?   Trennor's family came to us asking for assistance with gas to and from Children's Hospital in Cincinatti, Ohio.   Trennor suffers from what is called OEIS Complex.  I had never heard of this before and had to do some research.  So let's read and learn together.   By knowing more about the medical conditions others deal with, we may learn how to better assist them.   

Please note we will provide notes at bottom as to where the information was gathered.   Walk On does not claim any of the info given to be of their own or the accuracy of the information.   We are hoping that the info provided can just give some insight into illnesses we may otherwise never have heard of.  Please feel free to comment on this thread about the illness, encouragement for the family, etc.   

So Let's Begin.....

OEIS COMPLEX (Omphalocele, Exstrophy of the cloaca, Imperforate anus, and Spine abnormalities)  is a rare defect with estimated incidence of 1 in 200,000 live births. Most cases are sporadic, with no obvious cause. However, it has been rarely reported in patients with family members having similar malformations or with chromosomal anomalies. In addition, OEIS complex has been observed in association with environmental exposures, twinning, and in vitro fertilization. Monosomy 1p36 is the most common terminal deletion syndrome, with a prevalence of 1 in 5,000 newborns. It is characterized by specific facial features, developmental delay, and heart, skeletal, genitourinary, and neurological defects. We describe an infant with OEIS complex and 1p36 deletion who had features of both disorders, including omphalocele, cloacal exstrophy, imperforate anus, sacral multiple segmentation, renal malposition and malrotation, genital anomalies, diastasis of the symphysis pubis, microbrachycephaly, large anterior fontanel, cardiac septal defects, rib fusion, a limb deformity, developmental delay, and typical facial features. Chromosomal microarray analysis detected a 2.4 Mb terminal deletion of chromosome 1p. This is the first reported case with OEIS complex in association with a chromosome 1p36 deletion.

The above was taken from the US National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmed/20101692.

Amazingly, there was not very much information to be found on the internet about this complex.  I would love to hear from the family, or from other families about this complex, the struggles the child faces, and the treatment the child must undergo.   If you have any information to add please feel free to add it here or to email me at joshua@walkonfoundation.com

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Reply Angela DAngelo
12:30 PM on March 27, 2014 
My grandson Chandler was born with OEIS he just had 21 surgery he is a lovable smart little boy but we have almost lost him 5 times the main reason for almost why we have lost him is lack of knowledge in the medical field and no compassion medical personal need to be educated on this disease because there is lack of compassion. My biggest desire is that when OEIS children have to have surgery that people understand this disease
Reply Lee Gann
3:07 AM on March 25, 2016 
My son Reece age10 was born with OEIS complex.Reece has had many surgeries,my husband I have lived at Vanderbilt children's hospital on many occasions.I have a lifetime of stories I can share with this angels parents.There are many resources for information on this birth deffect.I found Vanderbilt medical library online and Cleveland clinics to have the best information.Cleveland Clinic is the most forward in the field of treating children with oeis.I am open to networking as parents of special needs children need to support each other.
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