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.
I would suggest that the girl come up with a great story about getting into a knife fight with assassins or something like that, but the fake belly button is even better.
Wow. I think it is such a good thing to share stories like this one – if it can help one other family…..
Tell the girl I can sympathise with her because I have had four umbilical hernia surgeries and I also have no belly button. My four year old and seven year old get a real kick from showing all of their fiends when we go to the pool. I love to tell their friends I am an alien and that I was hatched.
The girl is a good sport to tell the whole world about her physical problems!
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Wow! That’s amazing. So glad you had such a wonderful doctor. And I love the bit of humor – she’s not a clone.
My 1 month baby has the same thing and we just found out a week ago. He will have a operation to remove it this coming Monday.
Did your daughter very cranky at that time? His bellybutton were found infected a week ago and has been treated. He was so cranky a week after deliver. We thought it is his personality, until last week when something comes out from his bellybutton. Now it is not infected but he is still so fuzzy and can’t lay him down on the bed. Is the urachal cyst cause the pain? how long does it take for your daughter to recover?? Is it really painful procedure?
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It’s really hard to find anyone else on the internet that has mentioned this- my child was born on Dec. 27th…2 weeks after she came home, I noticed that her bellybutton looked strange- like an open wound with a white tube in it, and it was oozing yellow fluid. Called the pediatrician’s office 4 times over the next two weeks, with the people on the phone saying it was “normal”. Finally called and said “this is NOT normal” and they let me take her in. The doctor there said that he wanted us to take to her the hospital immediately for an ultrasound, and that night we were consulting with a surgeon- she had a urachal remnant still connected to the bladder, and it needed surgery. She had the surgery a few days later, and after a subsequent infection, she also has a beautiful man-made belly button 🙂 Thank you for sharing your story, it’s great to hear from those who have similar situations.
My daughter is going through the same situation. Her surgery is next week. Can anyone please tell me what to expect? Is she going to be in a lot pain? Any complications after the surgery? Thanks for sharing your comments.
I am a 45 y.o. adult who was diagnosed 5 yrs ago with a urachal cyst. It was only by happen stance that it was found (c/o period problems led to ultrasound which found the growth). I have had 2 CT scans with contrast and the third was just performed. It was found to have increased in size…..Waiting to see surgical urologist for further treatment.