A Father’s Perspective on CDH

Most dads aren't as strong as they pretend to be. I used to be one of those dads, but I'll admit that there were plenty of moments over the past few years where I've struggled. 

Our society has a very skewed vision of what the father's role should be. He is the protector. He should be tough. He can fix anything. The list goes on.

Before we jump into our story, let me tell you this: receiving a complicated medical diagnosis will change you. It will likely be the biggest challenge you will face, mentally, physically, and emotionally. As much as you are going to try, it is something you can't fix by yourself. 

And that is okay.

My family is one of the rare families that has more than one CDH diagnosis. And I've found, it doesn't get any easier the second time around. 

Our first son, Noah, was diagnosed with bilateral CDH in 2015. His condition was so severe that he had barely any lung tissue on both sides. He was born on October 24, 2015. Our amazing medical team continually monitored him and kept him comfortable after he was born. With minimal lung tissue, there was nothing they could do. He had a detectable heartbeat for just over 8 hours. We will always cherish the time we were given with our little angel.

Our third son, Soren, was diagnosed with left-sided CDH in October 2019. While his diagnosis was better than his big brother's, he was still in the severe category. Today, he is a happy, healthy 16-month-old. He continues to thrive because of the amazing medical care he received. Click here to read his full story!

Like most parents who just received a CDH diagnosis, we tried to do as much research as possible. While there are tons of great resources and inspiring stories available, I didn't find much from the dad's perspective. So what follows is a brief glimpse into our journey through my eyes.

CDH is typically diagnosed around week 20. Both of our diagnoses happened at about that same time. That left roughly 5 months between diagnosis and birth. Having that time was good and bad. It gave us time to get plans in place and do the research and testing that was needed. But at the same time, having to deal with so much uncertainty for that long was difficult. As fathers, our natural instinct is to try to fix whatever the issue is. Unfortunately, there is no "fix" for CDH, which made for a stressful 5 months.

During that time, I also found myself having to explain the situation over and over to everyone I saw. While we appreciated all of the support we had, having to talk about such a difficult situation so often started to wear on me. My wife and I made the decision to start a Facebook page where we could post updates to keep everyone in the loop without having to rehash all the details over and over again. In addition to the convenience of it, I found writing to be very cathartic. 

One word of warning. Along the way, there will be some that don't know how to appropriately talk about the situation. Trust me, I know plenty of these people. Some will say some things that will offend you. Others will be so uncomfortable, they will pretend like the situation doesn't even exist. Have grace. These are uncharted waters for everyone.

As amazing as our family and friends were during this process, they didn't truly know what we were going through. I urge you to reach out and find other people who know what you are going through. Talk with other CDH families. They know the stress you are going through better than anyone else. These other families were the greatest resource for us.

Shortly after our second diagnosis, we found Tiny Hero and began reading stories about Dr. Kays. At first, it seemed too good to be true, but we realized it was all true after connecting with some of these families. Within a couple of days, we knew this baby had to be born in Florida to give him the best chance. Without knowing how long we would be there, we started putting plans in place. 

I had been self-employed as a real estate agent for about 6 years at that point. Clearly, I wouldn't be able to show houses from 1,500 miles away. Luckily I had a team of agents working for me that I was able to lean on. Knowing much of my focus and energy would be needed in Florida once Soren was born, I made some shifts in my business to remove myself from a lot of the day-to-day responsibilities. While I gave up a pretty significant portion of my income with the shift, it freed up a majority of my time. 

Even though we had a few months before we would head to Florida, there were still plenty of appointments with our different doctors. We chose to work with the team in Madison (90 minutes from our house) for our local care since they were amazing in guiding us through our first CDH pregnancy. Appointments were monthly, then biweekly, and as we got closer to the end, weekly. We enjoyed the level of care they provided, but these appointments took a lot of time, especially when you factor in travel. I made it a point to be there with Christie for each of our appointments.

After 5 months of planning for (and stressing about) what was to come with Soren, we packed our car full of stuff and headed to Florida. I drove the 1,500 miles myself and Christie (at 34 weeks pregnant), and our 3-year-old son, Graham, flew down. Our friends and family all chipped in to make sure our house was taken care of, and the snow shoveled while we were gone.

Things really started to get real for us once we arrived in Florida. As scary as the entire situation was, it was comforting knowing we were now only a few blocks away from our medical team. With a mortgage payment and other bills back at home, being able to stay at the Ronald McDonald House was a blessing. We met some awesome families who were all dealing with their own CDH diagnoses. It was refreshing for me to meet some of the other CDH dads too.

There were 3 or 4 CDH babies born a couple of weeks before Soren. They all seemed to do really well after birth. I listened to their updates closely and found myself having some added hope. I kept thinking that because some of these babies did better than expected, then Soren would, too.

As soon as Soren was born, I was reminded that all CDH cases are different. Unlike the couple of babies born just before him, his condition was just as bad as our doctors expected, if not worse. He didn't make a sound. He was blue. He didn't look good. Soren was quickly whisked away to the medical team waiting in the next room. I stood there crying. They weren't tears of joy. I was scared. 

I stayed by Christie's side, making sure she was okay. I kept looking over my shoulder to see how the team was doing. After a few minutes, a nurse came to get me and asked if I wanted to see Soren. 

As I walked into the room, I saw him lying on the isolette, surrounded by doctors and nurses. He looked lifeless. There were bright lights shining on him and were dozens of cords, wires, and tubes. I feared the worst. Amid the chaos, Dr. Kays stepped away and gave me a quick update, and said, "he's doing pretty well."

Pretty well?!? I thought he looked terrible. Slowly my fears started to subside. I watched from afar, careful not to get too close. I didn't want to interfere with the medical team, which was moving like a well-oiled machine at this point.

During the planning process, they told me that as long as everything looked okay, I would be able to come upstairs with them when they transported him. Apparently, things were going okay because they asked if I wanted to come with them upstairs. I breathed another small sigh of relief.

There were probably 8 people surrounding the isolette as they wheeled it towards the elevator. They each continued working on him, not missing a beat. I followed close by, still wearing the full-body paper suit I had to hastily put on just before we entered the delivery room. 

We boarded the elevator and made our way upstairs. Once we made it to his room, the team quickly doubled in size. Everyone was eerily calm. My head was spinning just watching them, but from the second we got there, it was clear that everyone knew exactly what their role was. It was an early sign that packing up our family and moving 1,500 miles from home to be with this team was absolutely the right decision.

In total, Soren spent 73 days in the NICU. There were plenty of good days where it felt like things were improving, but there were also plenty of bad days where it felt like the bottom fell out. The setbacks were discouraging, but our medical team kept reminding us that it was completely normal. 

So much of the process was out of my control. I found myself asking more and more questions of the medical team, wanting to understand why they were doing the things they were. 

I slept on the couch in Soren's hospital room for 66 of the 72 nights he was there. It was one of the most uncomfortable beds I've ever slept on, and there wasn't much for me to do there, but I felt more comfortable being there with him. 

The biggest payoff was the day Soren finally got to leave the hospital. It was exciting and terrifying all at the same time. We were suddenly on our own to take care of this baby. The team did a great job preparing us in the days leading up to discharge. 

It was a great feeling to walk back into our house for the first time. Life was completely different than when we left, but we couldn't be more thankful for the amazing medical team that saved Soren's life. 

No matter where you are on this journey, know this: there is no right or wrong way to do it. This is like nothing you have ever experienced before. There will be good days and bad. I was in your shoes once. I know how impossible it seems, but take things one day at a time, and you will be surprised at how far this journey takes you. 

My family and the rest of the CDH community are here to support you along the way. This is one of the most supportive groups I have ever been a part of. Don't hesitate to reach out when you need help!