On November 17th we received a form letter from the NIH Medicolegal section of the Medical Record Department. (I've blocked our address on these documents.)
Attached was a report on "Hannah's" physical exam and test results.
In fact, there was only one factual thing on the report: Hannah had a urinalysis (to prove that she wasn't pregnant). The rest of it was ENTIRELY FALSE. False, or mistaken.
This is not what we expected from NIH.
Fortunately we met Dr. Maddox this summer at the NDSC conference in Washington D.C. Dr. Maddox spoke about the new Down Syndrome registry (a much needed resource to streamline research). Since she is the Deputy Director of the National Institute of Child Health and Human Development, she seemed to be a good person with whom to share our concern.
We were VERY surprised to find the attached Medical Record, with progress notes by Dr. Giedd. We never met him. He has never seen or touched Hannah, nor did any other physician give her a physical examination, yet the record shows that there was a “Detailed exam” and that she has “Typical physical features of Down syndrome”. Dr. Giedd also determined that Hannah is neurologically “normal”. In addition, Dr. Giedd believes that Hannah already has had her MRI scan of her brain “without complication on 10/12/12”.
We sent off copies of everything to everyone. The day we popped the letter in the mail we received a phone call postponing our next appointment. We are now re-scheduled for early January.
And then we forgot about it.
Until this morning. The phone rang. (I've been hesitant in answering the phone still being gun-shy from all those political calls--ARGH!!) Caller ID said "PUB HLTH SVC". So I answered. It was Dr. Maddox (SCORE: 1 for Beth!). She was very concerned. She just received the letter (I chose the wrong mailing address). She wanted to get some clarification on the situation. She wanted to get this resolved before we arrived tomorrow (the appointment that was re-scheduled to January). Dr. Maddox was worried that the appt. was canceled because the researchers were trying to cover-up the problem. I assured her that it wasn't the case. She said all the right things and asked all the right questions. Did I have any ideas that could explain the situation? (error, sinister plot?) She was glad that she had time to investigate.
I find it difficult to believe that none of the other three letters arrived until today. Really? I know that at least two have offices in the same building. I have the address from the letterhead from research correspondence.
Dr. Maddox obviously rattled some cages. This afternoon I received a call from Dr. Lee (who really had nothing to do with any of this). She was really surprised. We talked about it, and her theory is that it must be a clerical error. The error must have been made by Dr. Giedd (pronounced ghee-ed).
Dr. Giedd called next. He groveled a bit, and admitted that it most likely was him. He somehow put someone else's record in Hannah's record. He also never knew that medical records actually sent the records out to doctors and patients. I wonder how long he's been working at NIH....either WAY too long, or he's brand new. Or, it was just a plain old human error. He did apologize. He was more human than I was expecting.
It's amazing how easy it is to make a mistake. This one wasn't a big thing--at least in terms of direct impact on Hannah's health. Hannah wasn't so lucky when a Rite-Aid pharmacist made a pharmaceutical error after Nan's Tonsillectomy. She had a torturous and prolonged recovery since she basically had no pain relief for days post-op.
I know, people are people. I make mistakes, and I always hope for forgiveness. I'm glad that this NIH drama was only a "mistake". It could have been a system issue. Or something else.
So that's that. I think I have NIH back in order. Maybe they'll give me free valet parking in January. Oh. Wait. Valet parking is free for everyone.