CDH Round Two

As if hearing "something is wrong" during an ultrasound the first time wasn't enough… 

In October of 2019, my husband and I were overjoyed to learn we were pregnant. That joy quickly turned to fear when at our first ultrasound we were told something was very wrong with our baby. At our 18 week ultrasound, not only were we told we were going to have a baby boy but we also learned he had something called a Congenital Diaphragmatic Hernia. Like many newly diagnosed CDH families, we had never heard of CDH so we spent the remainder of the pregnancy looking up every possible outcome. Before we knew it, the time came to deliver our son Avett. We had no idea how long we would get with him. We had no way of knowing if he would even make it through delivery. We were terrified.

Ready or not our CDH journey was about to begin… 

On March 17, 2020 Avett Paul was born. He weighed 6lbs 15oz and had a head full of black, curly, mullet-like hair. After delivery they whisked him away to the NICU with my husband following close behind. There, in the West Wing NICU at Levines Children's hospital in Charlotte NC, our Avett put up the fight of his life.  

On March 19th, 2020 through bravery, he won his battle with CDH and passed peacefully in our arms. God blessed us with 40 hours, when doctors had promised us none. That day was hard. Who am I kidding? The whole pregnancy was mentally and emotionally exhausting. We were devastated. 

Time went on… We grieved. We grieved our son. We grieved our empty arms. After much genetic testing we were assured there was no reason we could not have a healthy baby. We began trying and discovered we were pregnant again. In June of 2021 we welcomed a 5lb 9oz beautiful, healthy baby girl. All was right in the world and we were overjoyed. 

When our daughter was one year old, we decided we wanted to have another baby. In August of 2022, we found out we were pregnant. We decided to bring our daughter to the first ultrasound, knowing she would be so excited to see her see her baby brother or sister. At the appointment we anxiously waited, praying we would hear a heartbeat. Then there it was, a heart beat. We were overjoyed. As we talked, the ultrasound tech, who we had grown to love through our journey with Avett, paused, looked at me and said, "Let's talk." She knew I did not like surprises and would rather her share her concerns immediately. The look on her face told me everything I needed to know.

“Something was very wrong.”

She shared that our baby’s neck was measuring thick, indicating a chromosome abnormality such as Down's Syndrome or Trisomy. When she left to get the doctor, I looked at my husband who holding our daughter and said ''This cannot possibly be happening again…” We left the hospital with a follow up appointment scheduled for week 14, praying our baby would make it. The baby did and after the ultrasound our doctor and a genetic counselor sat us down in a consultation room. With tears streaming down both of their faces the doctor stated "I can't say for sure until the anatomy scan, but it looks as if your baby's stomach is in his chest cavity. This baby also has a diaphragmatic hernia."

How? Why? There is no possible way! There is only a 2% chance of having a second baby with a diaphragmatic hernia. How could this be? I was devastated. 

Our only experience with CDH was death. We knew it was going to have to be a miracle for this baby to make it. I will never forget telling our family. We all kept trying to find ways the doctors may have been wrong… After all it was only week 14 and everything being so small meant they may not have seen clearly. Right? 

In October we learned that our baby was a boy! We decided to name him Anders. At our anatomy scan we found Anders had more similarities to Avett than we would like. We also found that though they were similar, Anders had a better chance at survival. There were a lot of negatives at that appointment but compared to Avett's anatomy scan there were actually a lot more positives. Unfortunately, my brain only heard the negative. I knew God was ultimately in control but all of my hope was lost. From that moment until about week 30, I could not see how there could possibly be a good outcome. I just could not see us bringing our baby home. I had to mentally prepare myself to accept that our daughter was likely going to be an only child. I began thinkinging about and planning Anders' celebration of life. I prepared myself to have only moments with him after he was born.

“I prepared myself to say goodbye before I had even said hello.” 

Before we knew it, we scheduled my c-section for March 30th, 2023. Ready or not, this baby would be born and we would love him, fight for him and support him for whatever time we were given. On March 22nd, a week before my scheduled c-section it was time to face whatever was to come. Anders was going to be born. I was so nervous. I did not want to face the days that were ahead. I did not want to make the decisions I knew that were going to have to be made. My baby showers were no longer fun because I was opening gifts with the mindset that my baby would never get to use the items gifted. I just wanted it all over. Pregnancy and childbirth had lost their "glow." . 

On March 22nd at 7:30am, lying on the operating table with tears streaming down my face, the time had come to welcome Anders John into the world. Anders let out a small cry, before being taken away to be stabilized.

“I held my breath as he tried to take his first.”

I was unable to see him until later that afternoon. Things were stable. Everything looked stable. Though this made me extremely happy, I also knew this was the "honeymoon" phase. I knew that, almost exactly three years earlier and just a few pods over, we had faced a very similar battle. How was this one going to end? Would things take a terrible turn out of the "honeymoon" phase? Would we be signing a birth and death certificate all within 72 hours? I know this is not the most positive outlook, but when you have lived the CDH life, lived a CDH loss… positivity is hard to come by.

After 24 hours filled with worry, fear and doubt we visited the NICU and were greeted with the most amazing news. The neonatologist looked at us and said "You are going to be so proud of him, I know I am." Not only had Anders survived the night, he was stable enough to come off one of the machines. I couldn't believe it! The good news did not stop there. She proceeded to tell us he was stable enough for hernia repair and that the next morning he was going to go in for surgery. My whole perspective began to change. At 40 hours old, we were able to hold Avett because we were having to tell him goodbye. At 40 hours old we held Anders because they told me "no baby should have to go into surgery without a hug from their mama.” So that evening, amidst all the tubes, ventilators, wires, monitors and beeping, I held Anders until my legs were beyond swollen and numb. I took in that moment as if it were my last. The goodness of God was being played out right in front of me. 

The blessings did not stop there. Anders’ surgery was a success and a mere 63 days later, we took him home! This was a day we had only ever dreamed about.

Four days later, we found out he had survived not only a left sided diaphragmatic hernia (LCDH) but he also had an undiagnosed right side diaphragmatic hernia (RCDH).. We were then unexpectedly re-admitted for low oxygen and the undiagnosed RCDH repair. This is very rare and the survival rate is extremely low. So we were proud (and terrified) parents of a double CDH survivor. We also discovered, our boys have a genetic syndrome that was missed through testing called Simpson Golabi Behmel Syndrome. This is an overgrowth syndrome that is accompanied by conditions such as diaphragmatic hernias. Because of this he has to be checked regularly for abdominal, kidney and liver cancer every three months until he is 7. 

Anders John is now a happy, smiley 7 month old. For now he is fully fed through a g-tube. He enjoys his paci, smiling and watching his big sister do anything. He has overcome four surgeries in 7 months; two diaphragmatic hernia repairs; a g-tube placement and his most recent accomplishment - open heart surgery. We are so proud of our double CDH, CHD survivor and we know his brother Avett is too.