David’s CDH Story
David was born with a right-sided congenital diaphragmatic hernia (CDH), but the doctors did not diagnose him in utero. When I fell at work at 31 weeks and 4 days, I started having contractions. The doctors were unable to stop the contractions, but I was not progressing. They performed an ultrasound to ensure everything was okay before sending me home, and the doctors suspected David had pleural effusions, causing concern that he might develop hydrops.
At 32 weeks, I had a C-section. After an X-ray, it was confirmed that David had a right-sided CDH. He experienced pulmonary hypertension for the first few days but underwent surgery when he was 4 days old. David spent 30 days in the NICU and went home on room air without any NG tube.
Unfortunately, a week after leaving the NICU, he developed a bowel obstruction that required surgery to correct.
When David was 4 months old, he began retracting and struggled to eat from a bottle. The local doctors could not determine the cause, as he showed no signs of aspiration on the swallow study. They referred us to Cincinnati Children's Hospital, where we met with the aerodigestive clinic. After conducting a triple scope, they discovered that he had malacia in his trachea, larynx, and bronchi, along with inflammation in his lungs and airway.
David has been on an NG tube since September 5th. We are scheduled to return to Cincinnati soon to meet with the feeding team and speech team. I am hopeful that he has improved and that we can come home with a bottle!
Despite all of this, he is such a happy baby! He has four older siblings who adore him.
It has been a really difficult journey for us. After our third hospital stay, I realized that this would be a long road ahead. I didn’t have time to research or prepare myself for David’s diagnosis, and my experience with his traumatic C-section made it hard for me to process everything. I left the NICU under the impression that he would be a “normal” baby. When I finally felt ready to learn more about what CDH truly is, I discovered Tiny Hero. While hearing others’ stories has been emotional, it has also provided me with comfort, knowing that I am not alone.
