Wednesday, April 6, 2011

One in 30 Million

I know that all mothers think that their children are special, but my little Lilla is one in 30 million, or more accurately, according to the Office of Rare Diseases of the National Institutes of Health, less than 1 in 200,000 in the United States.

A few weeks ago my special baby, who hardly ever cries and charms nearly everyone she meets with her charm and personality [just like daddy (not the crying part)] became very irritable and feverish.  She was diagnosed with a urinary tract infection and had to be hospitalized for 3 days to get antibiotics intravenously.  While at the hospital she had an ultrasound which showed a pocket of fluid that they thought could be a cyst.  

Yesterday we met with the urologist and they confirmed that Lilla has a very rare condition called an urachal cyst.  I could be reading it wrong, but I found an article which says that this type of condition occurs in 1 out of 30 million births.  

When we are tiny little babies still in our mothers womb, we have umbilical cords.  The part of the umbilical cord that attaches our bladder to our soon to be bellybutton is called the urachus.  In most children, the urachus disappears before birth, but in less than 1 in 200,000, it doesn't.  Of those less than 1, 65% have discharge from the bellybutton and 35% have no discharge but show symptoms of lower abdominal pain, fever, pain with urination, urinary tract infection or hematuria.  Lilla is one of those 35%.  

The urologist suggested surgery to remove the cyst and put Lilla on another antibiotic to keep any bacteria from growing in her urine beforehand.  Without surgery she is likely to have major problems with urinary tract infections and if not caught in time could cause more serious problems like kidney infections.  The doctor said that if she hadn't been hospitalized for the first infection they might want to just keep an eye on the cyst, but since she was hospitalized, it's best to just get it out of her.

We've scheduled the procedure for the middle of May and so I get a month of time to stress myself out and worry.  Of course I worry about the surgery itself and for the safety and well being of my only child, but I also worry about her being self conscious of the three scars that she will have, not being able to wear a bikini, or kids making fun of her.

So for the next month I will be trying to distract myself from my thoughts by snuggling and spoiling my favorite little human.  Statistically she might be 1 in 30 million, but to me she is the best daughter in ALL the world. 


melanie said...

praying for you, ron and beautiful lilla through all of this. :( love you guys so much!~

ajnrileysmommy said...

so crazy...what a scary thing to think about! praying for you guys.
what an ADORABLE picture of lilla!!