my son has OEIS complex and need support for his upcoming surgery!!!

Kendra - posted on 10/01/2011 ( 11 moms have responded )

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My son Ethan, who is a twin, has OEIS complex (omphalecele, extraphy of the bladder, imperforate anus, and spina bifida) when he was 3 days old he undergone a surgery to repair his omphalecele (all his intestines were in a bag on his stomach) and to give him a colostomy bag (due to his lack of rectum). He must undergo his second surgery in November, he will be 10 months, to put his bladder back in and re-align his pelvis bone, which involves cutting the hip bones on both sides and pelvis bones on both sides and will have screws in for 6-8 weeks...this surgery is scheduled for over 12 hours straight and I am so scared for my lil boy...any advice to help cope with my fears and stay strong for my baby boy will really help me and my family!! thanks so much!!

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Christina - posted on 11/29/2013

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Hi Kendra, Our 18 month old has OEIS and we are part of a private facebook site for families with a child having this condition. To get on the site you need to be invited as it is a closed site so people can discuss their kids conditions, needs, concerns. There are at least five sets of twins on the site, three of which were identical but one healthy and one with OEIS. So if you are interested in connecting with other families, please let me know.

Amy - posted on 11/29/2013

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Our daughter (Brooke 13 yrs old) was born with Classic Bladder Exstrophy. It is very scary in the beginning, but you will get to a point where his health is not the full focus and things do get easier. I recommend joining bladder exstrophy groups on facebook. There are great supportive people, both parents and adults with BE that can answer your specific questions and cheer you on. You are not alone and we will get you through. I am in the process of moving, and I'm homeschooling as well as working, so I'm not very active in the groups, but others are.
God Bless!
Amy

Christina - posted on 11/25/2013

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Are you on the OEIS facebook site? It has roughly 180 members of parents of OEIS kids from all over the world though mostly from the states. It's a great support group.

Christina - posted on 11/25/2013

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Hi, we have an 18 month old with OEIS and are part of a wonderfully supportive group on facebook specifically for OEIS. are you a part of it? If not, would you like to be? There are about 180 members from around the world, though mostly in the US.

Yadira - posted on 06/27/2013

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Grace That's also what I was told :/ I ask myself every single day what if I had tried ? Maybe I gave up too easily

Grace - posted on 05/23/2012

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How did the surgery go? What did your doctor's tell you about OEIS? I was told my son would not survive. I had no idea that more children are being born with OEIS like Tristan. i wish I had known.

Bisque - posted on 11/18/2011

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HI Kendra, I would love to talk with you more about your twins and having 1 with OEIS. We have so much in common! I know...all the surgeries are so overwhelming. Our most recent is this - our orthopedic surgeon said NOT to do the pelivc surgery, as there is a greater than 80% chance of it breaking down and their toes pointing our again. We are doing intense PT on horses to stretch her IT bands to her to toes/knees pointing forward. This has been hugely successful! Can we talk some time on the phone? Wishing you all the best, Bisque

Bisque - posted on 10/09/2011

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Hi. I have twin girls and one has OEIS. The other one is healthy. It has been a very long journey with so many surgeries and poor weight gain, years of TPN, months in the hospital. I would love to talk with you more about situation.....having twins is a completley different situation that a singleton. My girls are 2.5 years old now.

Kara - posted on 10/03/2011

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My son was also born witha an imperforated anus. He was 8months old when he had his surgery. The only thing that I can tell you that worked for my husband and I was prayer. We prayed for the surgeon and with the surgeon. Also listening to inspirational music really helped. I too will pray for your son and family. It is better that he gets the surgery now than when he gets older so the recover won't be so long. Rest in God's comfort and peace and no that he will keep you. Matthew 28:20b

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