Charlie's Story - Congenital Diaphragmatic Hernia (CDH)
I am blessed to be in a place to share our story. On Friday, December 13, 2013 we had our 20-week ultrasound for our second child. At home, we had a happy and healthy 3 year old son. When the ultrasound tech mentioned that there might be a hernia (hernia is all I heard in that moment), I remember thinking to myself that was something simple… push it back in. Her demeanor changed for the remainder of the ultrasound and it wasn’t until I walked to into the exam room to find my husband and the office manager arranging a high-risk appointment to confirm the diagnosis that I realized it wasn’t just a hernia. It was in that moment that I fell apart.
We begged the doctor for answers, but for reasons we now understand, she wasn’t able to give us enough information. We got a high-risk appointment that afternoon and thankfully didn’t have to wait the weekend. The three hours in between leaving that office and going to the next were awful and awkward. We didn’t speak much, because we didn’t know what to say. We tried to do some Christmas shopping, we tried to eat lunch and we just drove. We each had our moments of breaking down after Googling when instructed not to. I am so thankful that there is a place like Tiny Hero now where families can search and find the positive stories of HOPE. The high-risk ultrasound is a blur to me now. I don’t recall much of the conversation with the doctor after either, except for when I was asked if we wanted information on terminating the pregnancy. Typing that sentence out physically takes the breath out of me because of the amazing little boy that we now have in our lives.
His diagnosis of LCDH was confirmed and I was quickly overwhelmed with the schedule of appointments that I now needed to make happen over the next 20 weeks. Those next few weeks were challenging with a 3 year old around the holidays. We put our happy faces on for 12 hours just for our son, but we were scared of the unknown. We learned fast how unbelievably blessed we were to live in Cincinnati with some of the best doctors and staff in the country for CDH. After our first fetal MRI and echo, we sat in a room of at least 20 people to come up with a plan.
I prayed to be present in that moment, to be able to take in the information that I needed to hear and it worked, until we heard “liver up”. We had done enough research to know that this was not a death sentence. The Cincinnati team listened to our concerns and took the time to assure us that Charlie was in the best hands. We grew fond of our surgeon, Dr. Lim due to his ability to speak to both my husband and I and explain things even though we both think very different. I honestly struggled, but forced myself to bond with Charlie. The fear of being attached and losing him was very strong. Over the final weeks of the pregnancy, we built a tribe of relatives, friends and others that didn’t even know us. They prayed with us and for us, which gave me the strength to move forward each day.
I had a scheduled C-section on April 14, 2014. We delivered at our hospital and Charlie would be transferred to Children’s once stable. Charlie fought hard to not come out. He was intubated within 45 seconds and whisked away. My mom remained by my side so that Trevor could be with Charlie. Within an hour or so, the transport team brought Charlie by quickly connected to everything you could imagine possible before heading to Children’s. I had no other choice in that moment than to know I needed to be strong for him. I did everything I could to get up and moving to get a pass over to see him that next morning. He had rough first night being stabilized. Charlie came out a bit more severe than his last MRI had lead on to.
At 10 days old he had his reconstruction and they were able to use his own muscle flap. He remained on the ventilator for 4 weeks, came off for a few days and then needed an additional week of support. His Pulmonary Hypertension resolved by 2 months old. Charlie’s biggest battle was eating.
One thing we heard several times was Charlie was doing so well because we were there and we learned to ignore the cords and lines and beeps. We made that room our home so that Charlie felt at home. On day 74, Charlie was discharged from the NICU to go home on an NG tube. We were trained to put the NG back in when he pulled it out (daily) and we kept a journal of his eating to help him to continue to grow and avoid a G-Tube.
Cincinnati Children’s continued to see us through his specialists of Cardiology, Surgery (CDH Clinic), Orthopedics, Pulmonology and High-Risk NICU follow-up. High-Risk was such an amazing resource for us when we had complicated questions that seemed beyond our amazing pediatricians. We continue to follow up with each of these except high-risk, who discharged him at 2.5 y.o.
Going home was such a blessing after living on the go and trying to be with both our boys all the time… but going home was hard. Charlie puked after almost every feed due to severe reflux and was very slow to grow on top of it. Due to his disinterest in eating, he never was able to latch to nurse. I exclusively pumped for him for a year and we then fortified that milk with formula to increase his calorie intake per ounce. Looking back, I am not sure we realized how crazy life was. But it was during that time, when he began hitting milestones developmentally and continued showing us that he was a fighter. He was here to tell a story. We were blessed to make it onto this side of the story with a happy and relatively healthy boy. For this reason, I choose to live to find purpose in and positivity in the really hard situations.
I would never wish pain on my family like that again, but I wouldn’t change our path because of how much we have learned and grown.
Charlie will be 5 in April and is the silliest and happiest boy you will meet. He has always been small for his age...eating just isn’t his thing, but he continues to create his own curve on the growth charts. He has had Pneumonia 5 times resulting in inpatient stays, but his lung strength proves to be getting stronger year by year. Cognitively he is above average and physically he is right on track. Charlie’s biggest ongoing struggles are associated with Congenital Scoliosis. I will continue to advocate for him and all families affected by CDH because I feel pulled that is our purpose.
2023 update: Charlie is now almost nine years old! Since we last shared Charlie's story, he has grown up so much. Charlie is currently in 3rd grade and so smart. He loves to read and is in an accelerated math program. When he isn't at school, he really enjoys playing with his siblings, collecting baseball cards, and playing baseball, golf, flag football, and basketball. Charlie has such an old soul and a quick wit to go right along with it. As far as health goes, Charlie has done well over the last few years. We continue to see pulmonology and, in his most recent testing, learned that his lung strength is around 70-75% of a "typical" child his age. Charlie will not see cardiology for a few more years for a follow-up. This past December, Charlie had MAGEC growing rods placed on his spine to control his scoliosis. He has been recovering well from this and is looking forward to returning to his normal active routine soon.
