Thomas’ CDH Story

After trying for almost a year and suffering a miscarriage in the process, my husband and I were overjoyed to find out we would be expecting our second child soon. Things were going seemingly well with my pregnancy until my 20-week anatomy scan. Looking back now, I realize the appointment was a lot longer than it should’ve been. At the time, we were just excited to see our baby and didn’t think anything of it. He was flexing his arm muscles and we thought it was the cutest thing. Looking back now, I see it as a little confirmation of: “Don’t worry, Mama…I’m strong!”

After quite some time, the doctor came in and said, “I’m sorry to tell you, but we can no longer care for you or your baby. You will need to see a specialist.” We were given a brief explanation of Congenital Diaphragmatic Hernia (CDH), and our questions were essentially put on hold until we saw the MFM we had selected. We were told not to look to Google…but what else was there to do at the time? I ended up finding Tiny Hero and was given so much hope. I truly believe that knowledge is power, so finding a reputable source and being able to connect with other parents brought me so much peace. If you are in the waiting and the unknown, I pray that my son’s story brings you some comfort as well.

We were being closely followed by the MFM, and my son seemed to be progressing well. The doctors said that his CDH was very mild, that only his stomach was up in his chest, and that we most likely wouldn’t need ECMO. At my 37-week appointment, they said something looked off with his heart on the ultrasound. We went to MUSC Shawn Jenkins for a second opinion and ended up being transferred there immediately. I was terrified because I was just a few days away from having a baby and in my third hospital for this pregnancy. It ended up being the biggest blessing in disguise.

After a smooth delivery, Thomas was immediately intubated and did very well through the night. This quickly changed, though, within a few hours. At 18 hours of life, he was put on ECMO. He had his repair surgery on day three, and his hernia ended up being much larger than our original doctor had predicted. Basically, everything that could’ve been up in his chest was…stomach, bowel, spleen, colon, and partial liver. A piece of his lung had been detached as well and needed to be removed since it was essentially floating around with no purpose. While my husband and I were terrified, we were also so thankful that our plans had shifted and allowed us to end up at a hospital with an amazing NICU program. As it turns out, the hospital we had originally planned to deliver at didn’t even have an ECMO program, so we most likely would have been transferred anyway. Since we relocated a few hours to get the care he needed, there’s no telling what could’ve happened instead. It scares me to think about it, but I am positive everything that took place saved Thomas’ life.

He was taken off ECMO after 8 days. It ended up being just what his lungs and heart needed to grow stronger. His lung grew almost immediately to its full size but was still very floppy and weak. He still struggles with this and has pulmonary hypertension as a result. After two failed extubation attempts, he was successfully able to switch to low-flow oxygen after almost two months.

Once his oxygen support was sufficient enough, we began attempting feeds by mouth. He had an extreme oral aversion due to being intubated for so long, so we were at a standstill after several weeks of him barely taking any food. At three months old, we decided to go the G-tube route. The surgery ended up being much longer than expected, as he ended up needing a peg tube instead of the traditional G-tube.

He quickly healed from surgery, and we were cleared to go home within the week! I joke that God is in the details and has a sense of humor. When the days in the hospital kept racking up, I was getting discouraged and felt like we would never be able to take Thomas home. I learned to trust the Lord’s timing, but selfishly kept praying: “Please don’t let us be here more than 100 days.” It was Day 100 that we went home!

Thomas has been thriving ever since he’s gotten home. He is the happiest little guy, and you wouldn’t even guess everything he’s been through based on his personality alone. He’s still on oxygen support and tube feeding. Tube feeding has been such an unexpected blessing. I was scared that we wouldn’t bond as much as I did with my firstborn, who was strictly breastfed, but my expectations have been blown through the roof. I’m able to play with both of my children and give them my undivided attention, all while Thomas gets what he needs. He is on the lowest support for oxygen and really only needs it because of his pulmonary hypertension, so hopefully, he will be off of it soon so he can explore the world around him a little easier! He has lots of follow-up appointments and therapies, but we take on each one with a grateful heart that he’s here with us. He still has a lot of recovery ahead of him, but WOW, he has come a long way already!

We decided to name our son Thomas because of the hope we were given during a time of fear and doubt. Thomas was the only disciple who wasn’t present after Jesus rose from the dead, so he initially didn’t believe it happened. Thomas is sometimes given a bad rap for doubting, but I admire him for wanting to see and touch Jesus himself before believing. The biggest comfort to me during my pregnancy was knowing God was there, so there was a reason to have that hope. He’s also earned a nickname because of his middle name as well. Thomas’ middle name is Calvin. We began calling him “TC” (which also has ended up making him known as “Tough Cookie!” And what a Tough Cookie he is!)

If you are reading this story with fear for the future of your own CDH baby, I pray that you are encouraged by Thomas’ story. Surround yourself with success stories and knowledge. I encourage you to dig deep to find answers to better advocate for your child in and out of the hospital. These babies are so strong and will amaze you!

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Faith’s CDH Story

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Nicholas’ CDH Story