“I just found out my baby has an omphalocele.”
This can be a scary time. The amount each parent would like to learn varies from parent to parent, but try to educate yourself as much and as soon as you are able. Start by asking your doctors lots of questions. Record the answers as best as you can. If you’re not satisfied with the answers — or if a doctor is unable to answer your questions thoroughly — don’t be afraid to seek second opinions. It’s important that you prepare a list of questions to ask your Doctor, Obstetrician and/or Surgeon. Here are some questions you may want to ask:
- How often should I see my Doctor during my preganancy?
- Will I have a C section or deliver vaginally?
- What tests do I need to help determine any other related birth defects? Amnio? Genetic Testing?
- Can I arrange for a tour of the NICU at the hospital?
- What will happen when my baby is born? What will the delivery team first do?
- In addition to the omphalocele, what other medical conditions does my baby have?
- What is the chance of surviving the procedures needed to correct these problems?
- What quality of life can my child have if all the procedures are successfully performed?
- How many of these procedures has the surgeon performed before?
- What outcomes has the surgeon’s other O patients had?
- How long will my baby need to stay in the hospital?
- What about breastfeeding? Will I be able to?
- What is the likelihood of a similar condition being present for the next baby I have?
The next list of questions and tips was submitted by Stacie, an EmailMOOs member.
2. Ask the doctor to give you the “best” and “worst” case scenerio. This is a good reality check for what is to come.
3. Talk with your doctor about having an amnio. Discuss the risks and benefits of this procedure.
4. Ask for the parinatalogist to monitor you and the baby closely. Ask for everything. Stress tests, sonograms, fetal profiles, etc.
5. Visit the hospital where you and the baby will be. Interview surgeons.
6. Take a day and arrange a tour to see the hospital’s 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.
7. 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.
8. Keep a journal so that you can write down all of your questions beforehand as well as the doctors answers. This will be very important (during your baby’s stay in the NICU) 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.