Diagnosis/Pregnancy

 Starting at the beginning. We learned at 12 weeks that something wasn’t right with our baby’s anatomy. They saw on his ultrasound that his heart had shifted to the right side of his chest. We were told to come back in 4 weeks to repeat the ultrasound for more information but not to worry. Zach and I both left the office anxious but trying to stay positive. That same week I met with my regular OB and told her how stressed I was about what could be wrong. She reassured me that it wasn’t too concerning and we would follow up with another ultrasound. Within 10 minutes of leaving that appointment, my OB called me. She said that she had spoken to one of the high-risk doctors about my ultrasound and they could give further insight. Of course I went right back to the office. I was taken back to the genetic counselor’s office (where we had been given detrimental news in my first pregnancy). The high risk doctor immediately said her first thought was a CDH (congenital diaphragmatic hernia) or possible lung nodules. She went into detail saying that she was pretty certain it was CDH. She explained the diagnosis. Our baby had a hold in his diaphragm that caused his abdominal organs (stomach, intestines, liver) to shift up into the chest. When they shift up, it pushes the heart over and also has a big negative impact on lung growth. She then started telling me about risks. Because it was seen so early it was likely severe and survival was not optimistic. We had received devastating news with our first pregnancy in the genetic counselors office and the second time was just as hard. They compared the chances of both pregnancies with the complications they had to being struck by lightning twice. I left the office bawling. I was so upset and angry. I had been praying for healthy pregnancy since we started trying again and to not get that seemed so unfair. I immediately called Zach and told him something was wrong with the baby. I could barely get the words out to explain what I had been told. I also called my mom, also sobbing and tried to explain all that I could. Then I went back to work. I usually am one to try to “tough” out hard situations at work, but this was not one of those times. I went straight to my manager’s office, still crying. I just remember her face looking at me knowing something was very wrong. I broke down and said “something’s wrong with the baby”. She hugged me and even offered to drive me home. I declined and drove myself home, the crying never stopping. As soon as I got home, I met Zach in the garage and we just hugged. I told him everything I knew so far about the diagnosis. We had been together over 9 years and have been through some HARD stuff, especially within the previous year. And that was and has been our motto for this whole experience- “we can do hard things”.

The next few months, we researched. Any free minute I had I was looking up peer reviewed research and articles about what this meant for our baby.  I read about how there was a 70% chance of survival but this can be higher in the US. There was a new procedure called FETO that could be done in utero to optimize lung growth. But this was only done at certain hospitals and the closest to us was in Cincinnati- several hours away. During this, we continued going to our appointments and getting ultrasounds every other week. We slowly saw his abdominal organs move into his chest and his projected lung size get worse. We asked for a referral to Cincinnati Children’s Hospital and Children’s Mercy (local to us). When our doctor placed the referrals, he told us that Children’s Mercy (CMH) hired a new fetal surgeon who would be able to do FETO if we qualified. This was HUGE news because then we wouldn’t have to leave our home. Within 2 weeks we had our first appointment at CMH.

Our first appointment at CMH was a full day. We met their whole team including the new fetal surgeon. And let me just say she is AMAZING. Leaving CMH eased our anxieties, but they were always still there. They were (and are) the experts and have seen many kids with CDH. We continued going every other week to see the OB and get ultrasounds. The one plus of going so often was getting to see our baby more often than we would with a “normal” pregnancy. The farther along I got, I started to get ultrasounds weekly and had a few MRIs. I loved getting to see our baby but every week there was always the possibility that something else could be wrong. Thankfully, nothing significant was every found besides the expected things associated with CDH. The in utero FETO procedure has to be done at a very specific time during pregnancy, and as we were nearing that time our baby’s lungs were small. To qualify for FETO his lung size had to be smaller than 30%. At our final decision-making appointment for FETO, our baby’s lung size had gone up to 36%. It was an amazing feeling that he was “too good” for FETO but it was also a little disappointing because we had done so much research and seen the benefits of FETO. Because his lung size had gotten better his chance of survival went up, risk of needing ECMO (life support) was down, and it was anticipated to be a 4-8 week NICU stay.  Ultimately, it was kind of nice that the decision was made for us. The only advice they could give to help him be as healthy as possible was to just grow him. So that’s what we did.