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Pregnancy: Nov 2010 Babies Community
78 Members
1239769 tn?1275482459

Omphalocele

Brad and I found out yesterday that our baby has Omphalocele.  As of right now, we only know that there are some intestines that didn't make it back into the baby's body.  We aren't sure about how severe of a case s/he has. Honestly, I don't know what to say, do...can't hardly speak most of the time and every time I feel my belly I just want to cry.  I'm posting this to see if anyone else has heard of or has had this diagnosis before.  I could really use some support right now.  We go to the specialist next Thursday to find out more.  I'm praying that it's minimal and that my bloodwork comes back normal.  

Many babies born with an omphalocele also have other abnormalities. The chance for reoccurrence depends upon the underlying disorder:

    * Thirty percent have a chromosomal (genetic) abnormality, most commonly Trisomy 13, Trisomy 18, Trisomy   21, Turner syndrome, or triploidy.
    * Some infants with omphalocele have a syndrome known as Beckwith-Wiedemann syndrome.
    * More than half of babies with omphalocele have abnormalities of other organs or body parts, most commonly the spine, digestive system, heart, urinary system, and limbs.

Praying for the best....
12 Responses
1186413 tn?1326730549
I am so sorry you have this diagnosis.  I pray that it's not that bad.  I can't give you any personal stories but I just wanted to let you know I am here to support you.  So sorry.
Avatar universal
Hey!  So sorry you're going through this.  So, how did they diagnose this?  Did they see it on an ultrasound?

I have a friend that had a baby (and I'm not sure he had this particular diagnosis) but he was born with all of his intestines on the outside of his body.  It was a really long road for them with surgeries and feeding tubes and the works but he came through it fine!  And, now he's in school and thriving and eating normally and doing really well!  So, there's hope...technology and medicine are so advanced now that I bet they'll be able to help your baby no matter what!  And it may not be as bad as you're thinking (we have a tendency to come up with the absolute worse case scenarios).  And, now you know early so you can be totally prepared.  

I hope everything works out and keep us updated.  I will most definitely keep you in my prayers and goodluck to you and your family!!
1068361 tn?1290628159
What sort of blood work are you having? Was the condition seen on an ultrasound? Hopefully it is very minor.
All my best Christine
Avatar universal
Sorry you are going through this....I did watch an episode on the discovery channel in which a lady deliver her baby with his intestines in the outside she had a c-section to deliver him and baby was operated immediately after birth they tried to fit most of them in his abdomen and the rest they had to wrap them in waited for gravity to do its thing....baby was fine there was no other problems his parents were able to take healthy baby home....I don't remember how long it took baby intestines to go in but I think it was in about 2 weeks they did not mentioned anything about baby having any other problems besides the intestines being in the outside...hope everything goes well and sorry I can be of much help but I am sure if you go into to discovery channel website you can look for stories about similar cases....best wishes........Ana
521640 tn?1277407862
I haven't been on this site in a long time but I've just logged on and seen your post.....I am so sorry that you and Brad are going through this hun :-(     It must be really hard right now to console one another but I'm sure you and Brad are keeping each other strong. Until you know more after your appointment next week, it must be really hard to look forward to the future but just remember what a little miracle your angel is and how suprised you were when you found out you'd conceived. I watch alot of programmes with upsetting cases such as yours but those little babies are fighters and technology is soooo vast these days that there isn't much that doctor's cannot do and I'm sure they'll be able to help your little angel too.

I'm sure you will feel much clearer next week when you know more. Take care of each other x
Avatar universal
Hey there!  Just wondering if you guys had your doc appointment today and what happened...hope you're doing ok!
1097036 tn?1325018347
Just wanted to let you know Im thinking about you guys.
Avatar universal
Hi There

Have found your post on the web.  We are also expecting an Omphalocele Baby on the 25th November.  I would love to talk to you further about it contact me at
***@****
Avatar universal
hiya i have also just found ur post we are having an omphalocele baby due nov 8th
had the cvs test and came bk clear
have a heart scan next week

laura x
Avatar universal
Hi.  I was surfing the internet doing some research on omphaloceles and found your post.  I just found out today via ultrasound that I am having a baby with an omphalocele.  I know how you feel.  I can't stop crying.  I am having lab work and an amniocentesis in 4 weeks.  I am extrememly nervous.  I pray that there is nothing else wrong with my baby.  I know that it is in God's hands and I feel that the baby will be ok.  I will also be praying for you.  Please let me know how everything turns out.
Avatar universal
I am so sorry to hear about this. Hopefully everything will turn out fine after more investigations. Good Luck for your appointment tomorrow and try to keep up your hopes in these difficult times.
Avatar universal
My baby girl would have turned 1 today assuming she would have been born on her due date. We miscarried at 16 weeks due to omphalocele. I think about her every day <3
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