Becoming a CDH Mom

I took a pregnancy test just a week before, so I didn’t expect that second line. I had planned on going to a sip and paint later that evening, so I decided to take one more test. I was so excited! I ran to my husband - he was thrilled! Then we talked about how we would reveal the big news to our older son. I remember the day I took the test, March 5, 2020. One week later, the country went on lockdown. All the hopes and dreams I had for this pregnancy were crushed. Of course, I tried to make the best of it. While my husband could not go to any of my appointments, I would take photos or videos. My doctor was so kind, she would wait for the video to start before explaining what I was looking at during that first ultrasound. My husband found a gasmask-looking thing and insisted I wear it anywhere I went. So I did. 

We took the cutest announcement photos with our older son. He was so excited that I would be finally giving him a sibling. He wanted a sister. While I couldn’t tell him exactly what sibling he would get, we all were excited. This was our final child, we had wanted just one for so long, and after 5 years, we decided to have a second. We put so much into this pregnancy. When the big 20-week appointment came up, I asked if my husband could go. They told me no. The lockdown was still strict. So, again, I pulled my phone out and put it on speaker so my husband could hear. The technician was very nice! She had been a nurse for a long time but decided to return to school to become an ultrasound technician. I was happy to have such an experienced woman. She was very chatty, and I asked all the questions about how her job had changed in the last year. Suddenly, she stopped talking. I made a joke, and she didn’t respond. I looked at the black and grey screen, and I watched as she went over his chest again and again. She pointed to the screen, “look there, that black spot. I can’t see his diaphragm. It just stops.” I sat in silence. I didn’t know what that meant. She got up and left the room. I started to cry, and my husband was asking what was happening. My doctor came in with the tech. They talked over in the corner and looked at the screen. My doctor came and held my hand and said it was all fine. “It looks like CPAM! It’s okay, most cysts will heal on their own before birth, so you don’t have to worry.” I was relieved, but I looked at the tech, and she was quiet. She shook her head slightly and sighed. I remember that. She knew. She knew but she couldn’t override the doctor. 

I started seeing a high-risk OB, an MFM, after that. It seemed a bit over the top, but I did get so many great 3D shots. I remember everything about the doctor who helped me the day everything changed. I went in, and he started the ultrasound like normal. He stopped and told me he wasn’t convinced it was CPAM. He told me his concerns and how my son was developing. He suggested an MRI. Of course, I said, no problem, let’s get the real diagnosis so we can prepare. My friends asked me how I was handling the whole idea. I told everyone that I was fine, I mean, how often is it that 1%? I wasn’t worried, I was convinced I would go in, and it would be CPAM. The next day, I went to my MFM appointment, and it was eerie. He was different. He wouldn’t talk to me. I asked if he got the MRI results, and he told me, “we can talk about that in a bit.” I lay on the table quietly. Finally, he helped me sit up, and he sat in a chair by the door. “It isn’t what we thought. Your son has a condition called CDH or congenital diaphragmatic hernia.” He pointed out on the screen. “Here, that is where his diaphragm should be. This here, [he gestured to the chest] is not a lung. You can see the spotty texture. That’s his bowels, and here you can see his liver which is also in his chest. He is right-sided, which is uncommon. At this time, he doesn’t have much chance of survival. He won’t survive the birth, and if he does, we can make him comfortable while you hold him. He won’t be in pain. He will pass easily.” The doctor stood up and passed me a tissue. “I’m sorry! I will send the results to a specialist in Houston. Take your time. When you’re ready, come out and make your next appointment.” And he left. My husband spoke first on the speaker phone. “What does that mean? Does that mean Landon is going to die?” I started crying then. I looked at the final ultrasound picture on the screen. “I think he just told us Landon will die,” I sobbed. I picked up my things, I don’t know how, but I made my way to the front desk. The woman gave me an appointment card. There were so many pregnant women in the waiting room. They stared at me. I couldn’t look at them. I’m sure I was a mess. I got to my car, and I gathered myself enough to drive home. I decided I would prepare myself to give birth to an organ donor. 

When I got to Houston, I was resistant. They told me Landon would not only survive but would thrive. Yes, he was right-sided, but that didn’t mean he had fewer chances. After a full day of meeting with doctors and nurses and having echos and ultrasounds, we returned to our hotel and fell asleep. After a week of stress, my husband slept, and I started to relax. The team was confident. They had no doubt Landon could be repaired. 

Landon was born, on November 4, 2020, via emergency c-section. He was small, just 5 pounds. I got a glimpse of him before he was rushed to the NICU. By the time I got to see him, he was sedated and intubated. A few hours later, he was put on ECMO. We had prepared for this, his team was there every step of the way, and they explained everything. I was by Landon’s bedside every day. Seven days on ECMO, thirteen days intubated, two days on CPAP, six days on wall oxygen, and just thirty-one days in the NICU. On December 5, 2020, Landon came home!

But what do you do when you go home? Things don’t just go back to normal. You have a newborn, but a fragile newborn. As a mom, I was mentally scarred. I needed an outlet. After everything that had happened, I needed to be able to talk about it. He was home, but there was still more to be done. Even though the war of survival was over, the daily battles had just started. He needed many appointments, tons of x-rays, and therapies. I wasn’t just his mom, I was his medical advocate. I became more than that – I am a CDH mom. He couldn’t fight for himself, so I did it for him, and I always will. I found solidarity in the Tiny Hero community. It helped me so much that I decided to become a Tiny Hero ambassador. I spoke to moms from all over, and every single one of them had the same fears I did. I understood their pain. When Tiny Hero started looking for new contractors, I decided to throw my hat in. I had been a stay-at-home mom for 7 years. I had the smallest resume, but I knew I wanted to help. Every day, another mother becomes a CDH mom. Another link in the chain. With Tiny Hero, we are a community. We are a community defined by HOPE. We are moms, dads, and grandparents that are together fighting for our loved ones. At the darkest points of our lives, we found a light, we found a piece of hope, and we all grabbed for it. Welcome to the community, welcome to the family, and welcome to Tiny Hero.