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Omphalocele (kinda long sorry)

post #1 of 3
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Ok I'm not really sure where to start but...I had gotten my quad screen done a few weeks ago and it came back as risk for down syndrome 1:8...I was terrified! I went to Toledo Hospital with the understanding that they were doing an extensive ultrasound...At the time I refused to even consider an amnio! So I went to my appt. on the 26th of April...The Dr. had really kinda pressured me into getting the amnio...I ended up getting one because I didn't want to worry my whole pregnancy (although I would NEVER terminate) I just wanted some reassurance and my ex MIL went with me and she too was pressuring me...ANYWAYS I found out the baby does NOT have down syndrome but while they were doing the ultrasound (after the amnio) they found a hernia! I wasn't too concerned as my brother was born with one and I knew it wasn't life threatening...Well I checked my mail yesterday and they sent me a letter stating my baby girl has Omphalocele...I'm terrified! I know babies with this can usually just have surgery after birth to fix this but this is VERY scary for me! I'm doing everything alone!!! The only person I really have is my ex-mother in law! I've been praying like crazy...I def need some emotional support and good stories if anyone knows anyone that has had this or knows a lot about it! Thank you in advance!!! 

post #2 of 3

I am sorry you are going through this and really astonished that they would just send you a letter in the mail with this information instead of giving you counseling and help. I don't have any firsthand experience with it, but I remember this blog that I happened to read a while ago and it seems like it might be helpful: http://obabydavis.blogspot.com/  The baby is now a year old and the mom reviews all the surgeries and issues surrounding the omphalocele. hug.gif

post #3 of 3

My son was born 5 years ago with a very large omphalocele.  At that time I joined the Mothers of Omphaloceles, also known as the MOOs.  They can be found through http://omphalocele.net/wordpress/, and there are several stories you can view right on the site.  The group is now more active on Facebook, which you can find at http://www.facebook.com/groups/omphalocele/, and which now has over 400 members. 
It was through the MOOs that I learned about a repair technique known as paint and wait, or non-operative management.  Sometimes when the omphalocele is too large (typically if the entire liver is involved, and/or other organs) surgery should not be done too soon, as the babies abdominal space is too small for all the organs to fit in since they weren't there to start.  Though paint and wait has been around for over 20 years and has been proven to be quite successful, many surgeons simply are still unaware of the technique.  The best option is to have your care transferred to a children's hospital, as children's hospitals see more omphaloceles, and are more updated on the condition and the different treatment options. 

These babies are all fighters, and there is a lot of hope for them.  Hang in there!
 

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