Charlie's Story: Omphalocele

When Gayle and Charles Hughes, of Woodbury, NJ, became pregnant after several miscarriages, the couple was overjoyed. But after Gayle's obstetrician recommended an advanced ultrasound to monitor the baby she was carrying, their joy turned to alarm.

Their son Charlie was diagnosed with a giant omphalocele, a life-threatening condition in which his liver, intestines and stomach protruded outside his abdomen, covered by a thin sac of tissue. Though the local hospital recommended terminating the pregnancy, the couple sought help from the Center for Fetal Diagnosis and Treatment at The Children’s Hospital of Philadelphia. They soon became one of the Center’s first patients. Read more about Charlie’s journey.

Gayle walked into The Children’s Hospital of Philadelphia when she was 16 weeks pregnant with her son Charlie. Look at him now.

Transcript

Charlie’s Omphalocele Story: Look at Him Now

Gayle: From the very beginning it was an adventure. When we found out that we were pregnant, we were happy but nervous because I had already had several miscarriages. So we had an early ultrasound, and that’s when the doctor noticed that there was something wrong.

The giant omphalocele is where, if you could imagine a giant balloon on his stomach, and that’s where all of his internal organs were. Since CHOP was so close we wanted to go and see if we could get an expert opinion from people that had dealt with these types of situations before.

Charles Sr.: That was a ray of hope that this wasn’t some unknown situation and that there was a team that was practiced in dealing with these things.

Gayle: We would have weekly ultrasounds, and make sure that everything was progressing correctly. He was delivered at the hospital next door. And then he was transported over to CHOP, and then he went into the NICU. Now CHOP has the special delivery unit where women can actually have their babies by cesarean, or natural birth, in Children’s Hospital and then be right next to their children right away. For me to be a hospital away, it was hard.

He was born November 19th, and he had seven surgeries before January.

Charles Sr.: It wasn’t until the surgeries were all done that we actually got to hold him.

Gayle: We always call him our miracle boy because he wasn’t really even  supposed to be here. But he is going to be 18 in a couple of days, he’s a senior in high school, he just earned his Eagle Scout rank for Boy Scouts, which we’re very proud of. And he’s a wonderful son, couldn’t ask for better.

Charles Sr.: They helped prepare us before he was born. And they helped us to figure out the puzzle as it went along. And I’ll be eternally grateful for that.

Charlie: My mom walked through the doors of CHOP when she was 16 weeks pregnant with me. Look at me now.
 

Topics Covered: Omphalocele

Related Centers and Programs: The Center for Fetal Diagnosis and Treatment Celebrates 20 Years, Center for Fetal Diagnosis and Treatment