O.E.I.S. complex is a very rare and serious condition with multiple birth defects. The omphalocele is first. This is a small bubble like protrusion out of the umbilicus. Our babies omphalocele is not too large and consists of small intestines, liver and part of the bowel. The omphalocele will be operated on not long after birth. Exstrophy of the bladder is next. This means the bladder is on the outside of the body and split into two halves. Carter will have this operated on between 6-12 months of age. Imperforated anus is next, this means Carter's bowels do not go all the way to his anus and he will require an ostomy. This is where they pull part of the bowel through the abdominal wall and make a drainage bag for stool. Carter may be able to have this reversed as he gets older. This depends on the length of the colon, being able to pass solid stool and having sensation in the lower region of his body. The spinal defect is next. It is the most serious part of OEIS complex. Carter has whats known as a myelomeningocele. This is the most severe form of spina bifida. It will require immediate surgery after birth and must be fixed before any other birth defects. A myelomeningocele can cause parapalegia, mental retardation and may lead to shunt placement in the brain. We pray everyday these things will not happen but know they are a possibility. Carter is doing really good right now. He has already started his practice breathing and is very active.
Hey, My name is Heather my little boy has OEIS. I just wanted to tell you that i will be praying for you and your son. And that i know what a its like to walk through this with your child. My email is armybratt87@gmail.com, I love talking with other familys with children with OEIS. I look hope to hear from you! Heather
ReplyDeleteMy son was born with OEIS Complex he had lipomyelomeningocele he was 29weeks whe he was born also has Short Bowell Syndrome he is now 16 months and he has not had the surgery for his bladder yet, he weights 16.5 pounds he still doesnt seat or crawl but he is very smart its very stressfull what we go thru he is on TPN for 20hours because he doesnt gain much weight due to his Short gut also he has a deletion in Chromosome 18Q. My son is always sick with astma or reflux his ostomy output is too much and liquid he takes Pregestimil with MCT pil formula with Fruit Pectin gyriaSometimes I dont know what to do with his eating I try baby food but he gets nauseas and now he had a MRI that shows that he has polymicrogyria and he had seizures twice the second time his sugar was 18 and he was in shock it was very scary he was in the ICU For over a week it seems to be worse now than when he was born he did good in all surgerys and recovers pretty good but now that his older he is just sick and sick I just pray God so that he can grow and get healthy........
ReplyDeleteCarter looks like a happy little fellow! My granddaughter, age 3+, is also happy all the time and also has OEIS Complex. I know she is a lot of work for my son and daughter-in-law, but she is a lot of fun for me (and for them, too). Hang in there! It gets better. (I also had a daughter with meningeomylocele 32 years ago; she had a great childhood, took two years of college, and is generally happy although right now she is getting over the untimely death of her husband last year.)
ReplyDeleteHello my son was born with O.E.I.S. complex with cloacal extrophy of the bladder,crab clubbed left foot,tethered cord in his spine.He was born a couple weeks early...I was told by doctors that he had a 46% chance of surviving over night,my son is now 9yrs old :) God has a purpose for our special children remember he won't give us a trial that we can't handle.Its very difficult to deal with this type of specialty "I call it" I can't sugar coat and say it gets easier as they grown because I would be a liar,but I can say that these babies are fighters they're soldiers and win every battle just coming into this world is a battle won so love your child to the fullest never lose your faith,good luck and god bless
ReplyDeleteI have a baby in the nicu he has been there 7 months now he doesnt kno what he will be facing may 13 because he will be having surgery on his omphalocele. It is really hard to watch and go thru this every day but i always pray and i kno he can do it
ReplyDeletemy sister has OEIS syndrome. and she believes that she will never find someone and she lived to the age of 18 against all odds.
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