NeilRubenstein

July/August Update:

So we made the long walk down the hallway to the doctor’s office to discuss next steps since our 2nd son had just been diagnosed with CDH. There was a 98% chance of this not happening again…but it did.

We knew a lot more about CDH than we did 3 years ago, but every case is so different. Last time we found out at 37 weeks, so we really had no options, tests to take, or choices to make. This time we had 20 weeks to worry, stress, and pray. Plus this diagnosis and symptoms were so different than last time.

We knew there was a partial diaphragm. Last time our son did not have one. This time it looked like the heart had been displaced by intestines only. Last time we knew that some of the intestines and stomach had migrated into the chest pushing the heart over. The diagnoses couldn’t be more different. We were in uncharted waters.

So what were our options and next steps? We had to officially switch to the high risk, maternal fetal medicine doctors for the rest of the pregnancy. Up to now, we were seeing them for Level 2 ultrasounds, but not for regular appointments. That was the easy part. We had never even considered an amniocentesis due to the potential (albeit small) chance of a miscarriage or early labor. I had to call my son’s surgeon to let her know about the current diagnosis and get her opinion on next steps too. We trust her unconditionally and wanted her in the loop as soon as possible.

We discussed an amniocentesis and fetal MRI with the diagnosing doctor. The timing of the amniocentesis was very important as we were already at 20 weeks gestation. The main reason to do the amnio is to determine if there are any chromosomal abnormalities with the fetus (which unfortunately are not uncommon with CDH babies). However, at 20 weeks, we were already running out of time for the results to be useful. Not to mention if we did the amnio now, it could potentially lead to a miscarriage. Or if we do it closer to our due date, it could lead to pre-term labor.

We waffled back and forth on this one for at least 5-10 minutes. The doctor even called a geneticist to get her opinion and insight on the optimal timing for the amnio. We finally decided on having the amnio as soon as possible. But my wife said that she was not in any condition to have it that very day. I wholeheartedly agreed with her.

We left with a couple appointments on the calendar and a whole lot questions.

I took the rest of the day off of work and started making the calls to our family that we hoped we’d never have to make again.

The next day, I spent half the day on the phone with my insurance company, a geneticist, the diagnosing doctor’s office, and my son’s surgeon.

When I finally got a hold of the surgeon, I asked her how she was doing. Her response, “I was having a great day until I got your message.”