From the time you learn of your babies Omphalocele you are thrown into an entirely different and confusing world. Those who have gone before you have listed questions you may want to ask your doctors and other caregivers. Some Doctors will appreciate your taking an active role and some won't. If you are not comfortable with any one of your doctors or caregivers find another. We can only stress that this is your body and/or baby - trust that you will know what is best. Join EmailMoos for support and prayers.

The Top 10 Suggestions when one finds out they are having a child born with
an omphalocele:
(I thought this might be a good topic for parents to start off with)

1. Make an appointment right away to see a highly recommended
parinatalogist. I would suggest trying to get in that day. The longer you
wait, the harder it is to deal with this challenging news. The "unknown" is
very traumatic for parents.

2. Ask to have a level two sonogram. Make sure you ask the doctors how big
the "O" is, what is inside the sack, how do the organs look, check the
heart, and overall condition of the baby.

3. Ask the doctor to give you the "best" and "worst" case scenerio. This
is a good reality check for what is to come.

4. Talk with your doctor about having an amnio. Discuss the risks and
benefits of this procedure. It's amazing how good one feels after those
tests come back normal. It gives you a new ray of hope.

5. Ask for the parinatalogist to monitor you and the baby closely. Ask for
everything. Stress tests, sonograms, fetal profiles, etc.

6. Check out where you and the baby will be. Interview surgeons. I highly
recommend your "O" baby be transferred to a children's hospital even if it
means you deliver at another hospital. It's worth it!

7. Take a day and see what is like in the NICU. The nurses are great about
showing you around and making you feel comfortable. This opportunity gives
you a chance to prepare what it will be like for you and your new baby.
They may possibly have an "O" baby at the NICU where you can get the parents
permission to see the baby and talk with them personally.

8. Invest or rent a breast pump.

9. Think positive thoughts, take care of yourself, and prepare yourself for
a miraculous angel to come into your life. It will change your life
forever.

10. Keep a journal so that you can write down all of your questions before
hand as well as the doctors answers. This will be very important as the
surgeons, doctors, and nurses come when you least expect them to. This was
a valuable resource for me and to this day I still look back at my notes.
Write down your baby's vitals each day, how she/he is doing, set backs,
gains, meds, oxygen levels, etc. Most of all write down your thoughts and
emotions.

Submitted by: Stacie an EmailMOOs Member