Bella’s Story - Congenital Diaphragmatic Hernia (CDH)

Finding out we were expecting was an unexpected and scary life change. Already having five kids, we weren't expecting to have another. As we started to get excited about our new adventure, we began our ride on a very unfamiliar and turbulent rollercoaster of emotions. On the day of our diagnosis, my husband and I had somber plans to attend mass for a family friend that passed away. We had timed it so that after our appointment at the level 2 ultrasound, we would grab a quick bite from the hospital cafeteria and head to the church for the services. That way, we could join our friends for a short time at the reception to follow and still make it back on time to pick up our kids from school afterward. We had our schedule ready for the day...but we never imagined the devastating news we'd receive as we began our day, not only canceling all our plans but altering the course of our lives. We were nervous and excited to be parents again. We both watched the monitor on the wall. The reaction the technician had was worrisome. It was obvious that there was something wrong. It also concerned me how she responded to my questions and how quickly she wanted to exit the room. She told us to wait, and she would be back with the doctor so they could talk to us. It was such an unfamiliar feeling. While waiting for the doctor to come in, Jose and I mentioned how weird that was and how we may not be able to make it to mass, but we'd still try to make it to the reception to give our condolences. We still didn't know why the doctor was coming in to talk to us.

When the doctor finally came into the room, she introduced herself and explained why they had to do the advanced ultrasound. Both Jose and I were feeling scared at that point. It was as if we were listening in on a conversation that wasn't ours. It felt like there was a cold chilly echo in the room. The doctor uttered three letters that would completely change our lives...CDH. I tried to remember the words that stood out as I knew I was half paying attention. I did my best to remember, but then without being offered the opportunity to ask questions, they told us to take a minute and walk across the hall when we were ready.

Jose turned pale and was lightheaded. He swiveled over to a fan in the room and turned it on without saying a word. I grabbed a candy from my purse that my kids had surprisingly not taken and handed it to him. I knew it was serious, more serious than I had comprehended at that time. With wet, confused, scared looks in our eyes, we mustered the courage, held hands, and walked across the hall. Another lady was waiting for us. They had a medical explanation for what the diagnosis was. It seemed surreal!

We had so many questions. Jose had more questions than I did since I was still pretty much in shock and trying to process everything. I couldn't talk much from all my crying. I managed to ask a few questions. It felt as if we were in the room forever. We were given scenarios, statistics, numbers, medical terms, and explanations, but the worst part was hearing that my baby only had a 50% chance of survival. I just about lost it. We left with papers, phone numbers, and broken hearts and drove home- straight home. Barely speaking, both just mumbling things softly, trying to gather our thoughts and release our tears. We made it home- went to our room, and as we held hands, we both said a prayer and just cried. I took a nap, and Jose went to pick up our kids from school. When they all came home, we just went about our day.

After a sleepless night, we decided to hold off on talking about it with others- mainly me. I needed to learn more and understand what was happening. I wasn't ready to answer any questions, so I didn't want to let others know. We still didn't know enough. We had more appointments to go to, more doctors to talk with, more anxiety and stress build-up, and then it came to me! The 3 letters that were so scary to pronounce- I started to google them, the term Congenital Diaphragmatic Hernia! Sheesh, it was so emotionally difficult to see how much there was that affected my baby! So I exited google, I opened up FB to get a change of mind frame, but I couldn't, so I thought to look up CDH in the search bar....oh my goodness! I found groups of parents. I had finally found Hope! I immediately requested access. I started reading posts, and I realized it didn't have to be a 50% survival rate. My baby wasn't given a death sentence. I was able to sleep that night. It was still a scary journey but one where I could picture myself hugging my baby. I could see her grow up and be a sibling.

Isabella Grace "Bella" was born at 36-weeks at UCSF via C-section. She was intubated right at birth, so her weight is estimated to be around 5lbs. Our precious princess warrior started with a fighting chance. She had her repair surgery at five days old, and thankfully it all went well. Her liver was down, and it seems her hernia wasn't too large, so it could be repaired and closed up. She was gradually improving and showing so much strength as her little body recovered. After a long 87 days in the NICU, she graduated and was finally able to come home and join her loving, anxiously, excited crazy family where she belongs.

Today we can't imagine life without our Bella. She injects so much love and energy, and shenanigans into our lives. Since we've been quarantined, she's really taken advantage of the extra time we have for her. This time has been so crucial for her development. We are just a day away from her 2nd birthday, where we get to celebrate her, and that is a blessing none of us take for granted. Thank you, Tiny Hero, for the chance to share our Bella's CDH story.