Never underestimate the power of a dimple!

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Dimples on the face are super cute and so is a dimple at the base of the spine just above the tush crack but let me tell you from experience, the later of the two needs immediate attention.

It may be nothing but then again, it may be something.  My daughter was born with a “mild” sacral dimple about 1 inch above the end of her tush crack.  Having been a pediatric nurse for 12 years, I showed it to the ARNP at the doctor’s office during a routine well visit, suspecting it could be an issue. The nurse told me that it was a “mild dimple and not to worry.”  About two years later, my daughter now four at the time, was having the urgency to urinate frequently.  I took her to the doctor assuming it was a urinary tract infection only to find out it was not.  The doctor told me “it’s psychological, she needs to learn how to hold her pee.”  So here I am telling her teachers and those that take care of her to make her “hold it longer”.  This went on for a year.  She would be so proud of herself when I would pick her up from school and she would tell me, “Mommy, I only peed twice today!”

Kate is now five and just over a month ago, the urgency to urinate was excessive AGAIN.  And I can’t forget to mention that on three separate occasions, I told her to “bear down” to “push out all the pee pee” and she immediately put both hands to her tush and told me that it hurt to push. Back to the pediatrician we go assuming again that it’s a UTI and again, it’s not.  She ended up seeing a different pediatrician at this visit, I showed her the dimple and she also made light of it.  Said it was “mild” and probably not an issue.  She asked me if Kate has urinary incontinence or bowel incontinence and the answer to those questions was no.  This doctor also said the it’s probably psychological and it will “go just as quickly as it came.”  If she had listened to me during the assessment, I had told her this had been going on for quite some time now.  At this point, I took it upon myself to ask the doctor if she thought maybe the dimple was a sign of a tethered cord.  She didn’t ignore the possibility, thank God, and ordered an abdominal X-ray to see if she had Spina Bifida Occulta.  She felt that if the X-ray came back positive, then insurance would cover and MRI to rule out a tethered cord, otherwise Kate didn’t have enough symptoms to justify the MRI.  

The results came back positive.  Kate has Spina Bifida Occulta at L5 and S1 (the last vertebrae at the lumbar level and the first vertebrae at the sacral level).  Now we move on and get the approval for the MRI.  The doctor orders a MRI of the lumbar spine.  We schedule the test.  She has to be sedated for it so it’s quite the process of starting and IV and monitoring her and so on.  Here’s the kicker…while Kate is undergoing the MRI, the Pediatric Intensivist tells me that in order to rule out a tethered cord, you must do what’s called a CINE test and the pediatrician did not order that.  Unbelievable…now what?  A radiologist reads her MRI and reports that she indeed has spina bifida but otherwise a normal MRI.  No evidence of tethered cord.  Now I ask myself, how can the radiologist justify a report like that when the test needed to diagnose a tethered cord wasn’t even done!  If I didn’t have the nursing background that I do, I would’ve accepted that report and life would have gone on.  However, because of what the pediatric intensivist told me, I called her doctor and insisted the CINE test be done.  She referred me a neuro surgeon and said it she had never heard of a CINE test. 

Off to the Neuro Surgeon we go a week later.  I bring the MRI films that I have in hand and within minutes of her visit, he blatantly says, “she has a tethered cord, no doubt in my mind.”  He proceeded to educate me on the condition, showing me on the films right where the cord is tethered and suggested we do the CINE test for confirmation and then schedule surgery.  Back to the hospital we go for yet another test to be done while under sedation.  Within an hour of the test, the neuro surgeon called me to tell me the test was positive.  Kate is scheduled for surgery on Feb. 14th at 7am.  

So with that long winded story being told, I am sharing it because I would like all parents to know that you can’t always trust what your pediatrician tells you.  You can’t always trust what a radiologist reports and most importantly, go with your gut.  If you instinctively feel that something is not “right” with your child, chances are you’re right.  No one says you have to simply accept the answers your doctor is gives you.  In our case, I had one ARNP and two doctors tell me that the dimple was mild and nothing to worry about.  Had I ignored my gut, Kate would continue to grow and her cord be compromised to the point where nerve damage is irreversible.  She could have ended up with incontinence, scoliosis, numbness in the legs and so on. The longer a tethered cord goes untreated, the more severe the damage and from what I’m told, it’s more common that you think.

Keep Kate in your prayers this upcoming week…the poor little thing is in for a rough road.

Thanks~