Last week, before going to Shriner's, I had to pick up a copy of Delaney's x-ray from the first doctor to take with us. As I was sitting in the waiting room at Shriner's I opened the envelope to take a look at the x-ray one more time. Included in the envelope was the letter from Dr. F (the 1st ortho we saw) to our pediatrician. Basically it was a letter summarizing our visit. As I read the letter I just got madder and madder. Remember this is the doctor who said Delaney's RVAD angle was zero COBB angle was 40 degrees and that all we could do is brace her until she is old enough for spinal fusion surgery. This was also the doctor that I said didn't even touch her during the exam. In fact, he didn't even have us undress her, although Michael did open her shirt to show him because it was to hard to describe the bump. But he barely glanced at her. Here is one of the paragraphs from the doctors letter...
"On physical examination, looking, at her back, she has no hairy patches or dimples over her spine. She has no cafe au lait spots. She definitely has a left sided thoracolumbar type curve, it appears. With a little bit of traction on her, she seems to be fairly flexible. She has excellent range of motion of her shoulders, elbows and wrists bilaterally. She seems to have good strength in them, normal sensation and pulses. There is no swelling or atrophy present and no tenderness palpation. In her lower extremities she has normal range of motion of her hips, knees and ankles. She seems to have good strength, normal sensation and pulses. She has no swelling or atrophy present in them and no tenderness to palpation. She has a negative straight leg raising and no clonus and normal reflexes."
First of all, he was in the room all of 4 minutes. It's not like he was even watching her move around and play. In the letter he says "with a little bit of traction"...what the heck, he didn't even touch her. How would he know she had normal pulses, strength, sensation ect.. No one except the x-ray tech even touched her, and the doctor wasn't in the room for that. He didn't take her diaper off to even look at her lower spine to see if she had "hairy patches, spots, or dimples". How exactly did he come to all these conclusions? Why would his letter to our pediatrician say all of that? Is he a bad doctor or is he so arrogant he thinks he did his best? How many others has this happened to? Just to compare, Dr. Schrantz at Shriner's, had her in her diaper the whole time. Even opening the diaper to look at the base of the spine. He felt her back, checked her hips, moved all her joints, held her hands while she pulled herself up. He twisted her all around checking her spine. How can 2 appointments be SO different?
The thing is, I would have never known about this if I hadn't requested a copy of her records. And everything in this letter is what our pediatrician now thinks is what is going on. Imagine if we hadn't questioned. What if we had taken our doctors word on Delaney's prognosis. I know we all want to trust our doctors. We want to believe they are all knowing and have our best interests at heart. But the truth is, only we have our children's COMPLETE best interests at heart. We should always question, question, question. Get 2nd opinions and 3rd and 4th until we are comfortable with the care we are getting. Especially when it comes to our children. We have to be there voice, we have protect them and always try to do what is best. We are our children's best advocates. So if this has taught us anything, it's get lots of opinions and then go with your gut. We won't ever be afraid to speak up again. As in Delaney's case, it can make all the difference in the world.
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