Today’s featured cherub is Charlie Kramer. Charlie is the son of Katie and Trevor Kramer. Katie had this to share about his journey with CDH:
“On December 13, 2013, we had our 20-week ultrasound for our second child. When the ultrasound tech mentioned that there might be a hernia, 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 back into the exam room to my husband and the office manager who was arranging a high-risk appointment. It was in that moment that I fell apart.
The three hours in between leaving that office and going to the next were awful. 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. 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 now, 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. We learned fast how blessed we are to live in Cincinnati with some of the best care 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. When we heard “liver up” in that meeting we were frightened. The CCHMC team listened to our concerns and took the time to assure us that Charlie was in the best hands there. We grew fond of our surgeon, Dr. Lim, but I honestly struggled to bond with Charlie. The fear of being attached and losing him was very strong.
I had a scheduled C-section on April 14, 2014. We delivered and Charlie would be transferred to CCMHC once stable. He was intubated within 45 seconds and whisked away. Within an hour, the transport team brought Charlie by quickly, connected to everything you could imagine before heading to CCHMC. 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 moving so I could get a pass to see him that next morning. He had rough first night being stabilized and Charlie presented a bit more severe than his last fetal MRI had lead on to.
At 10 days he had his reconstruction and they were able to use his own muscle flap. He remained on the ventilator for 4 weeks, 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. On day 74, Charlie was discharged from the NICU to go home on an NG tube. CCHMC continued to see us through his specialists of Cardiology, Surgery (CDH Clinic), Orthopedics, Pulmonology and High-Risk NICU follow-up. 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. 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. 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. He has had Pneumonia 5 times resulting in inpatient stays, but his lung strength proves to be getting stronger each year. Cognitively he is above average and his gross motors are 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.”
HAPPY 5th BIRTHDAY Charlie, from all of us at CDH International and CHERUBS!
