Thursday, July 12, 2012

Kayli's pediatric spine orthopedic visit today. (shakes head)

Kayli's appt today: The Pediatric Spine Orthopedic at the Chidlren's Hospital in Chicago all but told us he is not interested in helping Kayli because of her T18 diagnosis.  That's ok though because the wacky dr does not sound intelligent enough to treat her anyways! Here are some unbelievable things that came out of his mouth! 1. Kypho-Scoliosis is NOT painful....unless you are old. 2. (Kayli's shoulder blade is out of place because of her spine deformities.)  She will never get range of motion in her shoulders, even if I helped fix her spine because she has T18. (huh?!). 3. Risser Casting is only for older people. (false) 4. There is another casting system that I don't know the name of...something french...  I don't do the casting, but I've sent everyone that wants that casting to Shriners.  (Next sentence was...) I've only had one person begging for the new casting system and I sent them to Shriners. 5. I'm a surgeon, but I won't do surgeries for little people like her. (he is an orthopedic spine surgeon at a CHILDREN's hospital!) I don't do casting.  I can brace her though.... (???? wth?!!)  6. When I asked what Kayli's spine curvatures were, he hadn't even looked at the Xrays taken today and had no interest in looking at them.  He said they don't measure kyphosis degrees because kyphosis doesn't cause body organs to move. (wrong, it is THE most dangerous spinal curvature!)  7. I don't do the growing rods surgery, and I don't suggest fixing her spine (surgically) because her lifespan won't be long and her spine is too small to ancher the growing rods to at her age. (yes, he actually said he KNOWS her lifespan!) (keep in mind, a surgeon in OH has 2 patients as I write this, who are Kayli's age and with T18 and had the growing rods surgery)  8. (I argued his comment about Kayli's lifespan and the pain she is in while she IS still here with us.)  To which he replied... You obviously don't believe the statistics about your daughter's diagnosis and you think she is better off than ALL the other children with Edward's Syndrome. (This is when Momma Bear came out!).  I asked him if he has researched or read resent research about Trisomy 18, to which he replied NO, none at all.  I started explaining the spectrum of T18 to him when he yelled over me that he didn't want to hear it and I don't need to tell him about T18.  After I calmed down, I asked him more questions and told him that since he admittedly does not know as much as I do about Trisomy, he needs to speak to me about Kayli's orthopedic condition and not mention Trisomy 18 again as an excuse for not treating her.  He agreed to brace her with a TLSO, and we both silently agreed not to make another appt for him to see Kayli again. He quickly left the room as I asked the Resident Dr to compare Kayli's past curvature degrees (on a disk I brought) with the degrees they found today.  The worst part is...there were student dr's in the room to which he TAUGHT this misinformation!  I am ashamed for the MD who had the honor of meeting Kayli today.  Ashamed of his poor intellect in such a high status role.  I lost respect for another physician today.  This one for his lack of intellect, and his lack of interest in continued learning.  On to the good part!  Kayli inspired the Xray tech and the student learning from the Xray tech! AND>>> the orthotist who fit Kayli for the TLSO was smitten by Kayli and is meeting with us tomorrow at a different location, to give her the TLSO instead of making Kayli wait a week (usual turn around time frame)!!! The boys picked out a purple/blue camouflage transfer (coloring) for her TLSO (back brace).  Kayli has another ortho appt tomorrow.  The ortho moved from Shriners (a place that refuses to treat Kayli because of her Trisomy diagnosis) and is Team Kayli, so it should be a good visit! :D  He is following up with Kayli's club feet corrections.  <3


  1. Colleen BelmonteJuly 13, 2012 at 6:06 AM

    You are such a strong mom! And I just want to kick that doctor's stinky behind. The comfort in all of these is knowing that our kids (living or angels) have a loving God, who knows what we are all going through. See how God turns a bad experience into something good! How can these other medical people not be inspired by Kayli and you? Hope all goes well with the rest of the appointments!

  2. Go Mama Bear Go!!!! It doesn't seem fair we have to educate the doctors, doesn't seem right we have to advocate for our kids to the very people who have the skill and background to help them. But you're doing what you gotta do, and I'm proud of you. I hope that doctor went home and couldn't go to sleep wondering if you knew what you were talking about and who he has become after starting off with an apparent heart for children. Maybe if it bothered him enough he went and did some research and will be better able to help the next child with Trisomy 18 who comes through his doors. Doubtful, I know, but it could happen. Kayli is beautiful. You are blessed.

    (Mama to a little boy with Down syndrome and a little girl who was given a very high likelihood of having trisomy 18 in utero but was born with no trisomy plus 5 other kiddos who rock my world)