This is a story about a girl and a rare disease; a story I should have told you long ago, but didn’t think of it till now. The girl, our girl, once had a rare disease called an Urachal Cyst. It was almost 12 years ago, so it’s not something we think about often, but it’s a story the girl adores.
When the girl was 10 months old, her little baby bellybutton turned from an “innie” to an “outie” over a weekend. That’s weird, all by itself, but it was clear there was something amiss and of a serious nature when the bellybutton started to OOZE and the girl turned crankier than ususal (she was a cranky baby to begin with).
So the dad and I took the girl to the emergency room and spend a VERY LONG NIGHT there with residents who DIDN’T HAVE A CLUE.
The first thing the next morning, we ambushed the girl’s pediatrician by showing up at his office and urgently requesting an audience, which was granted. Where physicians all over St. Louis had NO IDEA what the girl had, our pediatrician took ONE LOOK and said, “Huh. I read a paper about this once.”
Thankfully, the girl’s pediatrician is a genius and a wonderful man who knew what the rare disease was, and what to do about it — whiz, bang — making a few phone calls and scheduling surgery for the girl the VERY NEXT DAY. I have to believe this man moved mountains for our little girl and to this day, I adore this man.
Let us back up and explain. The rare disease, the urachal cyst occurs when the umbilicus, that is, the part of the umbilical cord that is inside the baby and runs from the bladder to the place that eventually becomes the bellybutton. Normally, this part of the umbilicus dissolves and is reabsorbed. In less than one out of 200,000 people in the U.S., oops — it doesn’t. In some cases, the umbilicus develops into a urachal cyst, filling with fluid and becoming infected. And let me just tell you firsthand. EW!
The crack surgical team put our baby under anesthesia and cored her like an apple down to her bladder, sewed everything up the way it should be and created, using a purse-string stitch, the most darling artificial bellybutton you ever did see.
The girl was also left with a significant scar that extends about two inches vertically from her beautiful navel, a perfectly straight scar, very obviously surgical, which, when bikini-clad, gives the girl the opportunity to tell the story of how, despite the fake bellybutton, she is not a clone.
The girl and I agreed to tell you all this story for the other one-in-200,000 people in the U.S. who develop this rare disease and are FREAKED out by it to let them know what it is, that it has a treatment and that yes, everything will be OK.