Landon’s Story - Congenital Diaphragmatic Hernia (CDH)

At our normal scan, we got a diagnosis of CPAM. No big deal, we were told. I started seeing a high-risk doctor in my area to keep an eye on it. On August 18th, I went in like any other appointment. The doctor started the ultrasound. This time was different. He stared at my boy's heart and chest. He told me he wasn't convinced it was a CPAM and wanted to be sure. He scheduled me for an MRI the next Monday. I went in, got it done, and expected nothing. I thought I would have gotten the same diagnosis. The next day I went in for the results. Again, my doctor started the ultrasound. He was quiet as he looked. I asked if the MRI results had come in. He nodded, "I'll get to that in a minute." Odd. I waited until he was finished looking, and he took a deep breath and helped me sit up. "It's not a CPAM. It is called a congenital diaphragmatic hernia (CDH). You can see his chest here — that isn't a lung. This here is his liver, it's moved into his chest, and it's pushed his heart off to the left. I'm sorry, your son has a right-sided case. He won't survive the birth. If he does make it out, you're looking at maybe a few hours to spend with him as he passes. There's nothing we can do. I'm sorry to tell you."

The rest I don't remember. I sat and stared at my boy's picture on the screen. He passed me a tissue. "I have a specialist hospital for you. We will call them to get you in. When you're ready, come out, and we can set up your next appointment here." What on earth? I called my husband. We cried together. I gathered my things and set up my next appointment. I stood in the waiting room, trying to catch my breath before driving home. There were so many pregnant women in the room. I was jealous, I was angry, and I was devastated. I started doing research. What was CDH? I found Tiny Hero, I read some survivor stories, and I wished I could have that.

For the next 6 days, I believed I was carrying an organ donor. I had panic attacks, and my husband couldn't talk about the baby without choking. All we wanted was this baby. We didn't know what to tell our older son. I got a call from Houston four days before my appointment there. They asked if I wanted a full-term abortion. I declined. I had set my heart on donating his organs. The day came for our appointment. My husband and I didn't sleep the night before.

We met with Dr. Anthony Johnson. He looked at the ultrasound and the MRI. "We have good news for you. You won't need FETO, you have too much lung. This is so much better than what your doctor back home told us. Your baby has 60% of his left lung and his liver is up, but we can work with this. Your baby is going to be fine." We went from a death sentence to he is going to make it, all within a week.

Landon was born via emergency c-section on November 4, 2020. He was intubated immediately and then put on ECMO shortly after. He spent 7 days on ECMO and only 31 days in the NICU. Landon defied the odds he was given and we have been amazed by his recovery. I am forever grateful to Children's Memorial Hermann in Houston. We wouldn't be where we are now without the care we received there. My goal now is to spread the word about Tiny Hero and the work that they do. Without the support we received through the website and the Facebook group, I don't think we would have been as upbeat. CDH is just a part of who Landon is now, but because of what he has gone through, he can do anything. Landon is a survivor — a CDH survivor, an ECMO survivor. Never give up on these kids, get a second opinion, and don't listen to the naysayers. Fight for yourself and fight for your baby!

2021 update: I think the biggest struggle we have now is that he looks "normal." His older brother asks questions about his scar and if it will go away. We are a family on the mend, but there are deep mental scars. Going forward, we are a stronger family than when this started. We decided to have Landon at the end of 2019. We always said one kid and done. For whatever reason, we gave it one last chance, and we are lucky we got Landon. We will always be on Landon's side, looking out for him. His doctors are all very happy with his progress — he has been hitting all his milestones, and you'd never know what we all endured during his time in the hospital. We are so grateful to the team we had, the care he received and the kid we got. He completed our family!

2022 update: Landon had a tongue and lip tie corrected in November 2021. He started feeding therapy when he was nine months old, and he is still in it. We began to notice his lack of speech around a year old, and after a few ENT and audiology appointments, we found out he wasn’t hearing as he should. In July 2022, he had tubes placed in his ears and his adenoids removed. It was hard having him intubated again for this procedure, but it wasn’t for long. He was back to normal that afternoon. He recently had his two-year checkup in Houston with his team at Memorial Hermann Hospital. Dr. Harting was very pleased with his growth, and they are hopeful for his future. No reoccurrence and nothing but smiles at this time!