Although each pregnancy, birth, and after care is different, there are similarities which we have tried to address here. The answers are written by some of our members and are based on their experience, research and information obtained on our site and in our EmailGroup.. If you feel an answer is not correct or if you have an additional question you would like to add please submit to OmphaloceleMom@aol.com

Please note that while we have tried to provide the most complete and accurate information as possible, each individual circumstance will be unique. Answers given are meant to address the most typical situations – please refer to your physician(s) for information specific to you and your baby.

  PREGNANCY  

  BIRTH

Will I deliver prematurely? While there is an increased chance of delivering a baby with an omphalocele prematurely (before the 37^th week of gestation), there is still a much greater chance that you will be able to carry your infant to term.

Will I need a cesarean delivery? It depends. Some physicians prefer to deliver all omphalocele babies via cesarean delivery and yet others take a much more liberal approach, delivering only babies with very very large omphaloceles via cesarean. In general, most physicians will recommend a baby with an omphalocele larger than 5 or 6 centimeters be delivered via cesarean. This is something you should discuss with your physician.

HOSPITAL

What role will the NICU nurses have? This may vary from hospital to hospital. However, generally speaking, it will be the NICU nurses that will be caring for your infant, carrying out the orders prescribed by the physicians. The NICU nurses will also likely be your main contact for information pertaining to your infant. You will probably get to know some of the NICU nurses quite well, and may even develop a close relationship with one or more nurses.

YOUR BABY

Will I be able to breastfeed? While there are many exceptions to this, chances are that you will not be able to breastfeed immediately, simply because your infant may not be taking fluids orally. If your baby is placed on a ventilator, for example, then your baby will likely be receiving all of his or her nutrition through an intravenous (IV) line or perhaps a feeding tube. However, you should be able to pump your milk and freeze it for future use. Be sure to advise your physician(s) of your intention, and remind the nurses while you are in the hospital. They can arrange for you to have a pump available at the hospital and one to take home on a rental basis, if needed. Many NICU’s also have breast pumps available for your use while your infant is hospitalized. Once your infant is able to take fluids orally, be prepared that he or she will probably have a harder time “taking to the breast” than an infant that was born healthy. This is because your infant may have developed an oral aversion and/or your infant may have lost his or her rooting reflex. Both of these can be overcome with a lot of patience, determination and hard work. Some moms that have stuck with it have been very successful at breastfeeding their O babies, and their babies are able to get the benefits of mothers milk. Other moms find it easier to pump their milk and provide it to their infant in a bottle, and yet other moms have resorted to formula with success.

Will I get to see and/or hold my baby immediately after birth? Every mother wants to see and hold her infant immediately after birth and have a chance to begin the bonding process immediately. Unfortunately, this isn’t always possible when a baby is born with problems. However, you should let your physician(s) know your desire. Some mothers of O babies are able to see their babies for only a very brief instant before the baby is whisked away to the NICU. Other times dad may be able to witness some of the initial work the NICU team does as they prepare the infant for transit / admission to the NICU (even if the NICU is just down the hall). This is largely dependent upon two things – the condition of your baby and the amount / type of experience your hospital / physicians have had with O babies. Generally speaking, the more stable your baby is, and the more experienced your hospital / physicians are, the more comfortable they will be in allowing you / your partner to witness the initial procedures that will likely take place in the birthing room, prior to transit to the NICU.

Will my baby have a belly button? More than likely your baby will have a vertical scar on his or her abdomen, which will be in approximately the same place a belly button would appear. Depending on the size of the omphalocele and how it is treated (initial closure, paint and wait, etc.) will determine, at least to some extent, what the final appearance will be. Many pediatric surgeons are sensitive to the desire to have a belly button. Sometimes a belly button can be fabricated during the surgery to close the omphalocele; other times follow-up surgery can be performed by a pediatric surgeon or a plastic surgeon to create a belly button. While these belly buttons typically are not perfect, some do resemble “normal” belly buttons.

RELATED COMPLICATIONS

Gastroesophageal reflux disease (GERD) is when food or liquid travels from the stomach back up into the esophagus (the tube from the mouth to the stomach). This partially digested material is usually acidic and can irritate the esophagus, often causing heartburn and other symptoms.

EATING ISSUES

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