Things to Discuss With Your Child's Surgeon

Have you just found out that your unborn child has an omphalocele? I know how devastating that kind of news can be. Been there, done that. Fortunately, you now have access to the wisdom that comes with experience. Every omphalocele case is different. What happened with my daughter Kelsey was highly unusual, yet I feel that there are lessons learned that will be helpful to all.

Either your obstetrician or a radiologist will break the news that your baby has a problem. Abdominal wall defects show up clearly on ultrasounds. Omphaloceles are very fixable. Please don't let any doctor talk you out of having this baby just because of the omphalocele. Many doctors will want to schedule an amniocentesis to check for chromosomal abnormalities. This is a highly personal decision, but I'm sure you're aware that the amnio itself carries a degree of risk. If you plan to continue the pregnancy knowing that chromosonal problems may exist, why not just have the baby tested as soon as it's born? Will knowing for sure make a difference to you while you are pregnant? Or will it be one more factor to worry about, should the test come back positive?

The next step will be doing what you are doing now. Research! Educate yourselves as much as possible about this condition. Surf the Internet. Disregard old books and articles written 20 years ago. Twenty years ago, many of these kids didn't survive. The technology and health care available now have improved a lot. Check out the Mothers of Omphaloceles web site to read stories about real people who have been through this.

The final step will be to meet and interview a pediatric surgeon. Factors to consider in choosing a surgeon are: where you live, if the hospital where you give birth has a good NICU and does infant surgery on-premises, your health insurance plan, if there is a teaching hospital in your area, and maybe who your obstetrician recommends. When you go to meet this surgeon (who might be there at the birth, by the way, so be prepared), here are some issues to discuss:

• Sac -- Exactly which organs are in the omphalocele sac on your baby?
• Malrotation -- almost all omph. babies have malrotated organs. You'll want to know where your baby's organs are. This can be done by sonogram before birth or an MRI after baby is born.
• Adhesions -- What will this doctor do to decrease the possibility of adhesions in your baby after surgery? If any doctor says adhesions are unlikely with omph. surgery, point him/her to our web site. Any abdominal surgery (including C-section, by the way) has that risk. As you saw, it became hell for us 2+ years after the baby's initial surgery.
• Importance of tunneling the central line -- Kelsey's was tunneled at omph. surgery immed. after birth but not at one of the surgeries during her crisis in early 1999. She got a staph infection in her un-tunneled central line which kept her in the hospital much longer and complicated everything.
• Location of baby's inferior vena cava -- Normally it should pass thru the liver but in our omph. baby it did not. The surgeon should be on the lookout for it, so he/she doesn't accidentally sever it. The Vena Cava is the main vein from one's lower extremities to the heart. It's VERY important that the doctor knows where it is!
• Location of the liver -- if possible it should be placed in its proper location beneath the ribcage. If it isn't, be sure the dr. lets you know. A liver lying beneath the skin where the belly button would have been is in danger of being injured in contact sports. We were told that it would be better for our daughter not to participate in soccer, football, karate, baseball, volleyball, that awful children's game called "Red Rover," or gymnastics. Of course that still leaves swimming, dancing, tennis, golf, music lessons, track, running, marching band, etc. These kids have very full, normal lives and should be able to eat anything barring any unforeseen digestive problems.

Another thing I would recommend is that when your child is old enough, consider getting one of those Medic-Alert bracelets that will be worn at all times. If your child were ever to get in a bad car accident or something, you wouldn't want some doctor slicing into your child without knowing that there was once an omphalocele. Of course, the scarred stomach without a belly button might be a major clue. :<) Better safe than sorry, though. If your child has malrotated organs, be sure the bracelet says that too. I am told that James Avery Craftsman (a jewelry company based here in Texas) has beautiful medical alert bracelets. Another option is Safety At Your Feet, which makes a shoe insert showing medical information.

Finally, if you are lucky enough to get an MRI done after all the surgeries are completed, have the surgeon keep a copy, give a copy to your child's pediatrician, and keep a copy for yourself in a safe place (safe deposit box, fireproof safe, etc.) should you ever move out of state or change doctors. Perhaps have MRIs done every few years for peace of mind.