Landon Hall Tatum was born on January 31, 2018, in St. Petersburg, FL. He was born with two congenital defects that he was diagnosed with a few weeks after his initial anatomy scan. We learned first that Landon had a Congenital Diaphragmatic Hernia (CDH) and then a few weeks later a heart condition that we would later learn was Tetralogy of Fallot.
Landon was born weighing in at 5 pounds 11 ounces. He came out kicking and trying to scream! Within four hours, he was placed on ECMO and had his CDH repair surgery the next morning. Within 19 days, Landon was able to be taken off ECMO, and we began a conversation about his heart condition. A few days after being taken off ECMO, Landon made a trip to the cath lab to have a stent placed in his PDA. This had to be done to help keep his PDA open until he was able to have his full heart repaired. Things went well, and we began weaning his ventilator support and sedation!
One day away from a possible extubation attempt, it became apparent that his stent was not holding up as it should. That night, Landon ended up in an emergency open heart surgery to place BT Shunt. The surgery was hard on Landon and at 3:30 am, Landon was placed on ECMO for the second time through his open chest.
Landon spent 12 days on ECMO post heart surgery. However, he was only able to withstand being without ECMO for 24 hours and was placed back on ECMO for the third time. Because of his open chest, our CDH doctor and heart surgeon did a very rare operation: switched his ECMO cannulas from his open chest to his neck and then closed his chest! This was a huge surgery because he would be placed on ECMO again through the neck after he had already been “tied off”. Thankfully, the surgery went well, Landon was able to be switched from his open chest to his neck, and his chest was finally closed! Within a week, Landon was able to be taken off ECMO for the third and last time!
Over the next few weeks, we began working on weaning his ventilator. We moved slowly but he still struggled. The day we tried to take away the breathing tube, he only lasted a few minutes. He did not move air at all. The doctors immediately intubated, and we felt as though we took so many steps backwards. We began having conversations that Landon may need his full heart repair sooner rather than later. For a typical Tetralogy of Fallot repair, the baby should be six months and close to 11 pounds. At the time, Landon was barely 7.5 pounds.
Landon had his full heart repaired weighing close to 8 pounds! He struggled afterward, needing several bronchoscopes and even another emergent open-heart surgery to replace a much-needed line and wash out fluid that was filling his chest. While he was recovering, it became apparent that he was still struggling from a respiratory standpoint. Now that his heart was fixed, hopefully, our doctor could help us get rid of the breathing tube and begin our journey back home! This, however, was when we were forced with a tough decision to have a tracheostomy surgery for Landon. At the time it was a tough decision, but the best for him developmentally. After that, we began our way out of the hospital and eventually back home to South Carolina. And on day 323 he was discharged!
After coming home, he immediately began all the therapies: Early Intervention, Physical Therapy, Occupational Therapy, and Speech Therapy. We began to see growth and progress in him that we weren’t sure we would ever see!
He began sitting up, rolling over, crawling, pulling to stand, and transitioning to all new positions. He started sleeping well at night. He started laughing, smiling, and playing in all the appropriate ways. He began spending less and less time off the vent during the day until he was off for good (except at night!).
Each day he just seems to be bigger and stronger.
For a kid who has had a long, tough road, he constantly has a smile on his face. He has a head full of curls and the sweetest, grayish-blue eyes. He literally never meets a stranger and has had so many people in his corner praying and fighting for him for the last several years!
We are thankful to be Landon’s parents and couldn’t imagine a life without him.
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