NeilRubenstein

September Update:

So the last time I wrote a blog post here, we were at 20 weeks and had just found out our 2nd son would also have CDH. Since we are now at 37 weeks and scheduled to have a c-section in a couple weeks, I think it’s time to play a little catch-up.

After finding out our son would have CDH, we rushed to have an amniocentesis and fetal MRI. The amnio would hopefully give us an indication of whether our son had any other chromosomal abnormalities (which are more common with children diagnosed with CDH). The MRI would definitively confirm that our son did have CDH and would help determine just how severe the defect really was.

At 22 weeks, we were able to have both tests. The Fetal MRI results were almost instant and confirmed that our son did have CDH. We had only a 2% chance of having another child with CDH and unfortunately it happened to us…again. We also found out that (at this point) only Baby R’s intestines had floated into his chest. His intestines had also pushed his heart over to the wrong side of his body. But the more organs from the abdomen in the chest, the more stress there is on the lungs and the more likely the lungs will be underdeveloped. So even though the heart was on the wrong side of the body, the fact that only the intestines were in the chest was as “good” of news as we could have hoped for coming out of the MRI.

Next was the amnio. That test was actually done before the MRI but it takes close to a week to get the results. The rapid results actually only take about 3 days to get but the final, final results take closer to a week. The rapid results came back normal…no chromosomal abnormalities and the final results confirmed this a few days later. Things were still pretty surreal to us as we found out so late with our first son that he had CDH that we couldn’t do any tests that would even matter. Last time we found out at 37 weeks. This time we found out at 20 weeks which didn’t only mean more tests but more time to worry.

So we made it past the first major hurdle with the results from our amnio and fetal MRI coming back normal. We would have level 2 ultrasounds and doctor’s visits with the Maternal Fetal Medicine group (high risk OBs) every couple of weeks until 32 weeks. At that point, we would have weekly non-stress tests, level 2 ultrasounds, and doctor’s appointments. The non-stress tests monitor the baby’s movement. A successful test is when the monitor shows at least two periods of increased heart rate (or movement/kicking) and two rest periods. The test also picks up contractions.

For the past 5 weeks, my wife has been having the NST’s and passing them with flying colors. The baby has been showing great movement and actually the technicians joked week over week about how difficult it was to catch out son in a resting period. He’s definitely a mover. The weekly ultrasounds have also shown that luckily no other organs have migrated into the chest. This is great news and actually not very common. Our first son ended up with every organ in his chest except for his liver and ultimately he had no diaphragm at all. Our second son has a partial diaphragm and at 37 weeks only his intestines are in his chest. The scenarios couldn’t be more different.

At the end of the day, everything we are hearing is positive. But you never know for sure with CDH until the baby is born. CDH still has only a 50% survival rate. We’ll know soon enough as our c-section is scheduled for September 10.

On another note, if you haven't already seen my latest fundraiser...please check out the CHERUBS Illinois blog at:

[url]http://illinoischerubs.blogspot.com/2013/08/cherubs-fundraiser-first-ever-original.html[/url]

I am "selling" an original lullaby written for CHERUBS by a good friend of mine for $1.89 per download. All proceeds will go towards CDH research.