Well the last few weeks have been a whirlwind to say the least. Our son was born on September 10 at 3:59 pm. However, he almost wasn’t delivered on that day due to a whole lot of miscommunication resulting in a tremendous amount of unnecessary drama. But that‘s another post for another day.

The bottom line is that Brody Asher was born weighing in at 7 lbs 8 oz and 19.5 inches. Unfortunately they hard to put my wife under general anesthetic, so I couldn’t be in the room when he was delivered. But I am told that Brody let out a little cry when he was born. So did my first son, but it is very common for CDH kids to not have enough lung capacity to be able to cry when born.

Brody was only allowed to cry for a split second before the neonatal doctors in the operating room intubated him in order to provide oxygen and respirator support. Without knowing how developed his lungs are, the doctors don’t want to take any chances.

As my wife was starting to become coherent after surgery, the doctors finally wheeled Brody into the recovery room for my wife and I to see him for the first time. It was a little hard to see what he looked like with all the tubes helping him breathe, but we thought he looked a lot like our first son.

After an hour, Brody was transferred to the Children’s Hospital, so he could be further monitored. At this point, we didn’t really know how severe his diaphragmatic hernia really was or if he had any other abnormalities or issues that would ultimately complicate and make his fight for survival that much harder. We knew that the accepted survival rate was only 50%, but we didn’t know much more.

The goal over the next couple of days would be to just stabilize Brody before ultimately scheduling his hernia diaphragmatic hernia repair. We’ve been down this road before with our first son, but that doesn’t make it any easier. Aidan is a blessing and is doing amazing, but that does not guarantee Brody will follow in his footsteps. However, Brody was doing so well that his surgeon (the same one Aidan had) decided to do his hernia repair when he was 3 days old. This is not just a umbilical hernia repair but major, major surgery.

It turns out all of Brody’s organs except for his liver and stomach had passed through his diaphragmatic hernia into his chest causing stress on his lungs and preventing them from developing properly. So the surgeon didn’t just have to patch the hernia in his diaphragm with a piece of Gortex, but she also had to move most of his organs back to their proper place in his abdomen. She also created a second abdominal hernia in his stomach wall. She uses this to give his organs extra space to grow and develop once back in the abdominal area. Brody (just like Aidan) will need a second surgery around 12 months old to close up this doctor made hernia.

So now the real fight begins. Brody has to start the process of learning to breathe on his own, eat without the help of a feeding tube, be weaned off of pain killers and Oxygen support…basically he has he learn how to be a newborn.

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.

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.”

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!

May Update:

I am going to take a break for the next couple of months with respect to my son’s story and how we dealt with finding out he had the birth defect congenital diaphragmatic hernia. This month I want to write about the Day of CDH Awareness which was April 19th. Next month, I plan to write about how CDH has affected our current pregnancy. We are expecting another boy in September.

April 19th is the International Day of Congenital Diaphragmatic Hernia Awareness. Since I have been so deeply affected by CDH, I have become the Illinois and Wisconsin Rep for CHERUBS. CHERUBS is the first and largest charity devoted to raising awareness of CDH, supporting families affected by this birth defect, and encouraging much needed research.

CHERUBS sponsored 14 parades around the country this year including 2 in Illinois on April 19th or 20th to help raise awareness of this birth defect. It’s only April but CHERUBS has already had an amazing year. Over 30 states issued proclamations recognizing April 19 as the Day of CDH awareness. Plus another 40+ cities and towns issued their own proclamations. In fact, we had 10 proclamations in Illinois alone including the state of Illinois and the city of Chicago. We also had some CHERUBS members jump out of an airplane in the UK to help raise awareness along with 4 buildings around the world light up in CHERUBS colors. The US Senate unanimously passed a resolution commemorating April 2013 as CDH Awareness Month, and the House is currently considering a companion resolution.

I personally organized the Chicago Parade of CHERUBS for the second year in a row. Despite the miserable weather we had, I am happy to say that we had over 60 people from 3 states participate this year. This year the event served a couple purposes. The parade’s main goal was to increase awareness of this birth defect that so few have heard of (yet takes at least 27,000 lives per year) and to bring families together to help build a sense of community among people who have a bond that is often thicker than blood. However, this year we also raised funds for much needed CDH research. 50% of the money raised this year is going towards research at the national level and 50% will be donated to Ann & Robert H. Lurie Children’s Hospital of Chicago. The Lurie Children’s Hospital of Chicago donation will either be earmarked for the NICU (a place all families affected by CDH know too well) or the ECMO program. ECMO or extracorporeal membrane oxygenation is a heart & lung bypass machine that 50% of those diagnosed with CDH require.

I don’t want to get ahead of myself, since I haven’t finished telling my son’s story here. But my family is truly blessed. Only 50% of those diagnosed with CDH survive. There are 1600 new diagnoses per year in the US alone. That’s 800 children who die from a congenital diaphragmatic hernia every year in the US. It may not seem like a big number to some. But to those of us who have lived through the horror of not knowing if your child is going to survive or not, it’s a huge number. Now imagine trying to go through this alone. That is how my wife and I felt. This is why I have become the Illinois and Wisconsin Rep for CHERUBS. No one should feel alone during such a traumatic time.

I am doing my best to not only spread awareness of CDH and CHERUBS, so that those affected know there is access to reliable information about CDH but also to help create a stronger sense of community among those affected. Obviously, I focus mostly on Illinois and Wisconsin, but I am active in CHERUBS on a number of different levels. So I’d like to believe that my impact is felt on more than just the local level.

My hope is that with increased awareness, the research dollars will eventually follow. I pray that the increased research will lead to new and better ways to treat CDH along with more consistent care for CDH babies around the world. A 50% survival rate is just not high enough for this day and age.