Landon's Story - Congenital Diaphragmatic Hernia (CDH)

On May 29, 2017, my husband and I found out we were expecting our first baby. We were over the moon excited to add a precious baby to our family. A few weeks later, we had our first ultrasound. We saw a little baby wiggling around with a wonderful heartbeat. Again, we were overjoyed and began planning to make our house a home for three.

Weeks flew by. Summer ended and work for me started back. We had another ultrasound where we would find out if our precious baby was a boy or girl! We had a gender reveal party with our closest friends and family members! Nothing could compare to the look on Zach’s face when we found out we were having a boy. Landon Hall Tatum!

We started our registry. We bought a crib. We shared the news of our baby boy with everyone we could! Everything was perfect!

Then, our 20-week anatomy appointment came. The ultrasound tech found a cyst on Landon’s brain that concerned them. The doctor we saw was concerned but assured us that these types of cysts are common and normally go away within a few weeks. However, she wanted us to see a specialist to have them get a better look.

The next two weeks were the longest weeks of our lives. We researched every possible outcome for the cyst that Landon had. We prayed. We prayed hard that his little brain would be okay. We were prepared for the worst but knew the Lord handpicked us to be Landon’s parents and He would make no mistake.

On October 3, 2017, we saw the specialist. We saw his little body wiggle all over the ultrasound. His heartbeat was 171! He crossed his little legs, lifted both arms up to his face, and (like always!) was laying right on my bladder. We were hopeful that our baby was going to be okay!

Twenty LONG minutes after our ultrasound, two doctors, an ultrasound tech, and a genetics counselor made their way back into our room. My heart sank. I just knew something was wrong with our boy! The doctor started to talk. He told us how glad he was that we had come in. We then learned, the problem was not the cyst on his brain.

We learned in that moment that our baby boy had a Congenital Diaphragmatic Hernia. Meaning that Landon had a hole that had allowed his stomach to move into his chest cavity right beside his heart. Right beside his heart where his lungs need room to grow. The doctor began going through options and details as our heads begin to spin and we became more confused.

We were given the night to process and then headed right back to the specialist to meet again and try to find out more of what was going on in Landon’s little body. I had an amniocentesis. The hardest (and most painful) thing I have ever done was let a doctor stick a needle into my stomach so close to my boy. Before the doctor started he said, “I can already tell by your faith the answer, but would you like to terminate your pregnancy?” and our answer of course was ABSOLUTELY NOT! Thankfully the procedure was extremely successful, and the doctor was able to collect the fluid he needed to check for any genetic disorders that Landon could have.

A few weeks later, we had an echocardiogram where we learned that Landon also had a heart condition. At that time, we were unsure of his heart condition, but the doctor was able to narrow it down to two conditions: Truncus Arteriosus or Tetralogy of Fallot.

We were then referred to our state hospital and a few days later made our way to have a repeat test that allowed us to get a better look at Landon’s CDH and unknown heart condition. By the end of the day, we were in a tiny room with 11 doctors, nurses, and nurse practitioners. We were given the worst news. Only a 35% chance of survival and the recommendation to seek “comfort care” after birth. We could not accept this.

We began researching CDH and trying to find our more and find the best possible surgeon and care team! We knew that with both conditions, CDH would have to be treated first. That’s when we found Dr. Kays and Johns Hopkins All Children's Hospital in St. Petersburg, Florida.

After a few days of contacting and some leg work, we got a phone call from Dr. Kays himself. That one phone call gave us a sense of hope.

Several weeks later, we made our way to St. Pete. We stayed at the Ronald McDonald House close to the hospital and were able to meet four other CDH families while there. We repeated the tests we had previously done and met with the CDH team. We were then given a 75% chance survival rate and an even bigger sense of hope!

We left with a feeling of excitement for the first time in weeks that our baby boy was going to be okay!

After the New Year, we made our way to St. Pete and began anxiously awaiting Landon’s arrival. We had a follow up echocardiogram that then confirmed Landon’s heart condition, Tetralogy of Fallot.

On January 31, 2018, 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 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 his was able to have his full heart repair. 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 like 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 made 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 repair weighing close to 8 pounds! He struggled afterwards, 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!

However, Landon still struggled. High CO2 and low ventilation lead us to the decision we did not want to have to make: a tracheostomy. We knew this was a possibility early on and felt this was the right decision to help Landon progress and eventually lead us home. After Landon’s tracheostomy surgery, we began seeing him make great progress and started showing us his wonderful personality!

On day 323, we were discharged from the hospital...just a few days before Landon’s first Christmas! What a treat it was to spend Christmas together outside of the hospital.

And on day 355, Landon finally made his way back home to South Carolina! Just one week shy of his first birthday!

Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given!

To learn more about our journey check out www.facebook.com/LandonHallTatum.