Omphalo what???

September 19th, 2012

There are many moments, that throughout your life, stand out and are forever etched into your mind. Some of mine are being in the Swiss Family Robinson treehouse at Disney World as a little boy, getting spanked outside of my uncle's wedding because I refused to walk down the aisle as the ring bearer, getting picked up by the bus at Connie's house because I had a broken leg, starting against QND my senior year at Flinn Memorial Stadium, the day Kelsea said "yes" when I asked her to marry me, and both mornings that she announced to me she was pregnant.

For whatever reason, God felt our first baby was just not right, and after about six weeks, he ended the pregnancy. We thought the world was coming to an end and that we would never be able to recover. However, God was using this time to strengthen our trust and faith in him. We didn't know it, but we were going to need that faith several months down the road.

Fast forward to September 17, 2012. Kelsea is in her 20th week and we are meeting at Quincy Medical Group for an ultrasound. We can hardly contain ourselves because today is the day we get to find out the sex of our precious little child. The U/S is amazing. We hear the heartbeat again (dad is taking videos of the monitor while the tech is making it louder for him!!!), we get to see the baby sucking on its thumb for a few seconds, we see what effect Kelsea's ice tea has on the little booger, and we get to see a face peering back at us, as if it knew we were watching it. Finally, the U/S tech says, well, it is definitely a boy! Kelsea felt all along it was going to be a boy (and a girl...she thought twins!!!) and I really had no guess and/or preference. I just wanted God to bless us with a healthy child.

After getting our DVD and our 5' long roll of pictures, Dr. Kagumba finally was able to come in and go through the normal questions you have to answer at every office visit. After going through the measurements, which were all on par for our child's age, Dr. Kagumba caught us off gaurd and the conversation turned to one of those memories that will be etched in your mind forever. She told us she had some bad news, something that I easily recall her saying before.

A million things raced through my head in the two second pause before she continued. I thought I heard her wrong...there was no way there could be bad news. Our precious little boy was alive and well. His heart was beating strong, he was twisting and turning, and he even seemed to wave to us at the camera. Nothing stuck out on the U/S monitor. There was no third arm, or missing foot. There was a heartbeat, a beautiful spinal cord, two hemispheres to the brain. She had to be wrong.

Then it came out. Omphalocele. Omphalo what? Omphalocele she replied. A word that I had never heard of, nor could I even begin to pronounce, had within a 2-second span, become my life.


Our little baby boy's abdominal wall had not developed and what basically happens to 1 out of every 5-6,000  is that internal organs now begin to grow on the outside of the body. This is something that can be corrected as soon as our baby is born, but Kelsea had become a high-risk pregnancy and would require the care of a specialist.  Belleville baby with something similar from 2010.

We headed off today (9/19) to Springfield to meet with a Maternal Fetal Medicine (MFM) specialist and find out just what this means. You can imagine the research I completed in the 36 hours prior to our trip this morning. I basically finished the doctors sentences for her today.

Well, we had another U/S at St. John's Hospital in Springfield, Illinois today and got some good news and some bad news. The good news is that early results indicate there are no chromosomal defects or heart defects connected to the Omphalocele (which is fairly common....about 50% of cases are tied to other chromosomal defects). However, it is also still too early to tell on the heart and more tests and an MRI are being ordered. We also did a "Harmony" test for the "Big 3" chromosomal defects. Not because we wanted to weigh our options, but because we want to be informed as possible when our little one enters the world. This is only a screening, and we might decide to do an amnio in a week or two if certain results come back to us.

The bad news that we got from the MFM Doctor was that the omphalocele was large, which we saw on the ultrasound today. The doctor told us she had never seen one this big before. It was at this point, I immediately starting thinking about different options because I knew from my research, what that meant.

The omphalocele can be corrected, pretty easily if it is a small one, immediately after child birth. However, the larger it is, the more complicated it gets. With large omphaloceles, the abdominal cavity is not big enough for the organs to be pushed back inside once the baby is born. Gradually, over time (days, weeks, even months), they are covered and slowly pushed in as the abdomincal cavity grows. It can still be fixed, however, as one could imagine, there are more risks and complications. We also decided we wanted to go to St. Louis and meet with doctors who specialize in repairing omphaloceles. I have already promised my boy he will never have to worry about anything and that his dad is going to take care of everything. When we got home today, Dr. Kagumba said she would work on that in the morning, so we hope we can get in to see one of the doctors early next week.

A positive thing is that Kelsea's health will not be jeopardized due to this condition, other than normal pregnancy complications. We have a long, difficult road ahead of us, and we are both really scared, mainly due to the fact that we don't know many, many things. However, we know that we have the best support system anyone could ever ask for in our family, our friends, each other, and most importantly, God. We will struggle at times (as we have quite a bit already) and I know we will question, and get angry, and sad, but I also know it will be short-lived because God has a plan. As the title of this blog states, I have adopted a new motto: If He leads you to it, He will lead you through it.


It's been a long 48 hours, and we have to drive to Spring Grove, Minnesota tomorrow night for a funeral. Kelsea is fast asleep.....not sure how though!