Omphalocele

This topic contains 15 replies, has 11 voices, and was last updated by  nervous1st 3 years, 2 months ago.

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  • #10429104

    i-am-pregnant
    Keymaster

    Omphalocele

    #10429105

    Peasquack
    Member

    Well I had my appt. The high risk DR said the baby has an OMPHALOCELE its like a large hernia with intestines and other organs protruding and will have to be corrected with surgery when the baby is born. The DR said it can come with chomosomal defects too. They did an amniocentesis and we will know that for sure in 10 days. PLEASE PRAY for us.

    #10429106

    nicstyler
    Member

    I had my 19 week appointment yesterday. The doctor found an omphalocele with the bowel and liver out. They did an amniocentesis today and tomorrow we meet with a perinatalogist. I’ve never been so scared in my life. If anybody can leave us a message if their baby had this, please contact us. Thank you!

    #10429107

    mum4eva
    Member

    Hi, i do not have a child with an omphalocele, but i have 2 friends who do. Both children are doing fine. It was very scary for them, both had very different experiences, one was only in the hopital for a month after birth, but the other was about 8 mths. Little babies are so amazing at what they can cope with and with the right medical care, you are quite likely going to have a positive outcome. I do have a child with a chromosonal disorder and she is just wonderful. All the best i hope that you can get some answers and a plan for what you need to do to get your little one through this. Please keep us updated.

    #10429108

    i-am-pregnant
    Keymaster

    i am 43 and this is a totally unexpected pregnancy. it took me weeks to come to terms with the fact i was pregnant. at the 12 week scan we were told that the baby had ‘something wrong with its tummy’, a week later at a nuchal translucency scan it was confirmed that baby has an ompalocele. this news devestated us esp knowing my age is against me, and ompalocele is associated with chromosonal abnormalities. we go back to the hosp on tues 23rd to see the cons and to have an amnio. a very fretful time, full of tears, worries and fears. My thoughts are with anyone who is in this situation, waiting for news about something so prescious is indescribable.

    #10429109

    i-am-pregnant
    Keymaster

    with my last pregnancy i was late getting my u/s. so at about 21 weeks i found out my baby had what they thought was an omphalocele. we ended up seeing a high risk specialist and it turned out it was much more than an omphalocele. my baby had no abdominal wall. all his insides were on the outside, he had a very short umbilical cord, he had a clubbed foot and were were told he was not compatibile with life. 🙁 we lost our little boy at 22 1/2 weeks. the good news about having just an omphalocele is that it is fixable! my little cousin was born with one and is a beautiful young 11 year old little girl now:)

    #10429110

    AlanaOnTheWay
    Participant

    My baby was diagnosed with an omphaloce when I was 14 weeks pregnant. We had an amnio and everything came back normal. I am now 28 weeks and growing very anxious as I also have a son who was born prematurely at exactly 28 weeks and I am high risk for another premature birth. Has anyone out there had a child born with omphalocele come early and how did it effect their recovery???

    #10429111

    Angelnkc
    Participant

    From what I have been told I was one of the first babies born this way to survive.
    I was born in 1966 with all of my insides on the outside of my body except my heart, lungs and diaphram. I had my first surgery at almost 3 days old. In 1969, at the age of 3, it was found that my stomach muscles had not developed and my abdomin swelled to the size of a basketball. They inserted a nylon mesh which forced the musceles to interweave and form. I never had a belly button. My mother was told that I would probably never be able to have children.
    I am now 42. I have a grown son.
    Technology has come so far since I was born. I am happy to have been part of the medical history that found a way for babies born with this defect to go on to live happy, full lives.
    Never give up hope.

    #10429112

    anxious88
    Participant

    i just turned 27 weeks and my babys liver is on the outside of her little body. my water broke a week ago so im stuck in the hospital for 2 months to make sure my baby has a chance of survival …as long as she doesnt try leaving my tummy early…im on complete bed rest…im so scared but i have to have faith so my baby stays strong!

    #10429113

    babyat39
    Participant

    I am 41 yrs. old. I had my 2 yr. old with fertility shots. Found out I was pregnant naturally with #2! Baby was diagnosed with an omphalocele. 50% of these babies have associated defects or chromosomal problems. So far, baby looks good. I will be 14 weeks on Sunday. It is much to early to tell if baby is o.k. as defects do not usually show themselves til later. I will have a fetal echo on the 29th to check baby’s heart. If you had a baby with an omphalocele or know of someone, please let me know as i am trying to become educated!!

    #10429114

    babyat39
    Participant

    I am now 18 weeks and had my second fetal echo. Things don’t look so good. Baby has not only the omphalocele, but 2 holes in the heart (one is big), a clubfoot, spina bifida, and the skull isn’t shaped perfectly round (bec. of the spine), although he is not paralyzed. We are having an amnio tomorrow for information purposes as they are suspicious of Trisomy 13 or 18. We will let God decide the course of this baby’s life. It is so difficult, as I have begun to feel him move. I talk to him and sing to him. They say that you can have 2 major problems like he has, and not have a chromosomal problem, but not more than 2. I hope they are wrong and this baby proves them wrong!!! If he does have the chromosome problem, he will either die in utero or shortly after birth…..

    #10429115

    babyat39
    Participant

    Baby was diagnosed with Trisomy 18. I spent 3 days in the hospital because I was leaking amniotic fluid, but it has stopped. This is so difficult, but we are going to love him as long as the Lord allows us to!

    #10429116

    mskayla
    Member

    I am currently 37 weeks pregnant and my son has a small omphalocele. with my 1st u/s apparently the dr was able 2 tell that he had it at 17 weeks tho he refused to inform me and my SO. the dr also refused to give us another u/s cuz he said there was no medical reason. well b/c of this I decided to swith drs b/c I wanted to find out the sex. within an hour of my new dr getting my records they called and scheaduled me an u/s 2 look more and c if my LO really had this defect. well he does and will need surgery after he is born. he will b immediately shipped 2 a childrens hospital after birth where I can join him approx. 6 hours after delivery, win I will b discharged from hospital. anyways if there r any mommies whom would lyk 2 talk further please feel free 2 PM me on here or u can find me on FB my name is Kayla Fine. even if its several days or months after this post please feel free 2 find me even just 2 talk. well gewd luck 2 every1. hoping surgery goes well 🙂

    #10429117

    nervous1st
    Member

    so im 37 weeks pregnant and am scheduled to have my son on december 14th 2010 🙂 he has a large omphalocele. we had chromozone testing done and everything came back normal making us very lucky. he’s been growing as normal as he can and has no other abnormalitys. he is a strong little guy and im carrying him all in my back… i find myself saying to ppl (no one really notices) that i cant wait to have him home, instead of i cant wait to have him…cuz i know the beginning is gonna be very hard… i love him so much i cant wait till he’s home…the doctors say he’ll be in the hospital 3 to 6 months…hopefully he proves to be stronger then expected and comes home sooner then expected

    #10429118

    Technomama79
    Member

    Hi, my baby was born with a very large omphalocele where his bowels and liver were out. I am proud to say he was born a healthy 7lb 9oz. They were able to get the stomach contents in within a week because of his large size and he has no other problems that we know of. He has been in the nicu for about 9 weeks now for we are just trying to ween him off the oxygen and get his feeding to 100%. I am truly blessed to have such an amazing little fighter…btw, his name is Liam!

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