Our omphalocele story

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    June 29, 2009 - July 3, 2009

The beginning of our story. . .

June 29, 2009 – 18 weeks, 1 day pregnant - the day of our big ultrasound to look at the overall pregnancy and to determine the sex of the baby.  With our other two pregnancies we let the gender be a surprise, but we decided to find out this time.  What was supposed to be an exciting day, turned into a nightmare!  They saw that our baby has an omphalocele.  An omphalocele is when one or more organ(s) are developing outside of the body in a sac.  The stomach did not close up properly and basically our baby has a large hole in the stomach with organs protruding out.  For 20 minutes they took pictures (not even letting me watch), but could tell us nothing more.  It was the worst 20 minutes of my life!  We were devastated, losing hope, and wanted answers.  They sent us for a level 2 ultrasound to confirm the omphalocele and to determine the extent of it.  As for the sex of the baby. . . the baby didn't cooperate so they couldn't determine.

July 2, 2009 – We went for our level 2 ultrasound where we heard more bad news.  The Omphalocele is very large (4cm x 5cm already).  It is considered a giant omphalocele,  and the doctor is very concerned.  He said it is very large for this stage of the pregnancy and that our baby's intestines and liver are developing outside of the body in a sac.  He said it would be very difficult for the baby (about a 50% chance of surviving) and that many "O" babies (this is what they call babies with an Omphalocele) are born with other chromosome defects.  The most common chromosome defects that come with omphalocele babies are Trisomy 13, Trisomy 18, and Trisomy 21 (Downs Syndrome).  After many questions and many, many tears, we said we would think about doing an amniocentesis (to determine if there was chromosome defects) and left.  We found a place to sit, talk, and cry about the situation.  And within 15 minutes we were back in the office and asked them to go ahead and do the amnio.  They agreed to do it.  They said we would get results within 24- 48 hours.  So we went home and waited for the results.  You probably need some good news by this point – we sure did.  Well, here is our good news. . . our precious baby is a boy.  Name is to still be determined as Daddy is not cooperating with that.

July 3, 2009
– My new OB, a high-risk doctor called a perinatologist, called around 6:00 tonight with great news.  The rapid amnio results (otherwise known as FISH, I think) came back showing NO other abnormalities!  Praise the Lord!!!!!  What a relief!  He said the rest of the results would be back in 7-10 days, but that the major ones to worry about with an Omphalocele came out fine!  Hallelujah!  Our little guy DOES NOT have Trisomy 13, Trisomy 18, or Trisomy 21 (Downs Syndrome). J God sure is good.  From my own research, I have found "O" babies with chromosome abnormalities only have about a 50% chance of surviving, but without the abnormalities, the survival rate increases to 90%.  We sure like those statistics much better.  Our next big hurtles are. . .
          1. "O" babies often have congenital heart disease
          2. "O" babies often have scoliosis
          3. Our little guy's omphalocele is VERY large which makes surgery extra challenging.

We have an appointment Tuesday, July 14 with the pediatric surgeon.  We hope to have answers to our long list of questions answered at that time.He will look at our ultrasound pictures and hopefully tell us what plan of action he recommends once our baby boy is born.  There are a few surgical options to consider, and we may not be able to make a decision until our boy is born.  Often times they do surgery a day or two after birth, but other times they wait months to allow the belly to grow and give the organs room to "move in".

Of course, one has to ask, "Why our baby?" "Why us?" "How will we get through this?"  Well, we will get through it by the grace of God.  As to why this is happening. . . only the Lord knows why.  We can't even win a scratch-off lotto ticket, but this only happens to 1/10,000 and we get it. Go figure. :)  There has to be a huge life lesson for our little boy to teach us.  The book of James 1:2-4 describes the trials of life like this,"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.Perseverance must finish its work so that you may be mature and complete (in faith), not lacking anything."   This test in life will strengthen our faith, and we will lean on Him for comfort, peace, guidance, and hope.

If you google the medical term "omphalocele" let me caution you that it is not pretty.  We have spent over a week researching this condition online and have found comfort in reading other parents' stories. We have even been in contact via email with other "O" moms- from the mid west to the west coast to Canada and to Austrailia.  They have given us much hope.  Although there are tragic stories, there are also many "O" babies that by a year or two, the only evidence of the omphalocele is the beautiful belly scar it leaves.  Through prayer, hope, and the Lord's guidance, our precious boy will be a happy story that we intend to share by creating this website.

At this time, we ask for your prayers. Psalms 86:6-7 says"Hear my prayer, O Lord; listen to my cry for mercy.  In the day of my trouble I will call to you for you will answer me."

We will keep you posted, and let you know what we find out when we meet with the pediatric surgeon on Tuesday.

We ask that you please pray daily for our son. We feel so blessed for this life God has created.

God bless!

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To read about our prenatal doctor appointments, click here.