NeilRubenstein

June update:

Well, when I said that I was going to write about how the birth defect congenital diaphragmatic hernia (CDH) was affecting our current pregnancy, I was planning to write about level 2 ultrasounds and additional stress. Wow, have things changed in one month.

Our 16 week level 2 ultrasound for our son due in September was completely normal. The baby was the right size for 16 weeks gestation, the heart rate was great, and nothing looked out of place
As a refresher, CDH occurs when the diaphragm does not develop properly while the baby in the womb. When this happens abdominal organs float into the chest causing the lungs not to develop properly. It is very common for the stomach to push the heart to wrong side of the body and intestines to float up into the chest as well. Unfortunately, CDH can snowball into numerous other defects, conditions, and chromosomal abnormalities. There is only a 50% survival rate for children diagnosed with CDH.

For my almost 3 year old, he actually had no diaphragm at all. All of his organs were in his chest except for his liver. If the liver floats into the chest, it can be an indicator of severity since it is such a large, dense organ.

Now let’s get back to our 2nd son’s story. Our 16 week level 2 ultrasound was perfect. We had a number of other level 2 ultrasounds scheduled, and we decided to keep them just in case. However, since there was a 98% chance of us not having another child with CDH, we felt pretty good.
Déjà vu…our 20 week level 2 ultrasound started off just like any other. The technician took all the normal measurements and said that the heart rate was great. However, she mentioned a couple times that she couldn’t get a good look at the heart. We thought it was just the angle of the baby. She left the room and the doctor came in to do his own scan (which we expected). All of sudden, we noticed that he visibly sagged in his chair and started rubbing his eyes. My wife and I looked at each other. We knew what the other was thinking without saying a word. We both started holding our breath.

The doctor pointed out the diaphragm and then went on to say the heart wasn’t in the correct place. I can safely say that both our hearts skipped a beat at that point. I know my first thought was, “Not again!” The doctor went on to say that he spent a long time trying to determine what caused the heart to move as there are a number of conditions that can cause it. However, none were evident.

I never thought it would happen again. But then our world came crashing down….for the second time! The doctor said, “I am truly sorry, but it looks like this is another case of CDH.”

WHAT! AGAIN! There was only a 2% chance of this happening. 2%! After my wife and I both lost it for a bit, we had to make the long walk down the hall to the doctor’s office to discuss next steps. AGAIN!