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Thread: Well, I finally wrote 'the letter' (long vent & graphic)

  1. #1
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Well, I finally wrote 'the letter' (long vent & graphic)

    Some of you know that my younger dd had major surgery in April and May of 2006 to close her bladder. At the time, they also broke and reset her pelvis to pull everything together, and she had to stay in traction for 2-3 weeks. It's hard to describe, but she was literally hanging from her ankles in the traction. Her legs were each wrapped, then wrapped together, straight up in the air, hanging, and the rest of her body had to stay flat on her back. Being 2 years old, she was not pleased with this and also was writhing in tremendous pain. Her epidural was not effective, and she was never really sedated. Her surgeon never told us he would be away, but he left on day 2 after the surgery for 10 days of vacation. Now, mind you, my dd's surgery was extremely rare. It is only done on newborns about 5 times a year at this major hospital, and her case was even more unusual because she was 2.5 at the time of surgery. We have no idea why he scheduled her surgery when he wasn't going to be there to take care of her afterward, and no idea why he didn't tell us this ahead of time.

    The residents checked on her while he was gone, but no attending surgeon saw her for the 10 days while he was on vacation. The day her primary doctor left, she slipped out of her traction. The resident took down the traction to re-do it and saw she had several large wounds on her ankles and knees where apparently the bandages literally tore her skin away. It looked horribly painful.

    The resident re-hung the traction and she stayed like that for 10 more days. She was in agony. We asked if they could do anything else to keep her wounds from getting worse but the resident was unsure. When the primary doctor returned, he looked at the injuries and immediately took her right out of traction. I wonder if he had not been on vacation if he would have done it sooner.

    Long story short, when we took he for another opinion after she got out of the hospital several weeks later, her new doctor told us her "wounds" were actually third degree "friction burns" caused by the traction bandages. In fact, the nurse practitioner we saw at the new hospital (which is a burn hospital) ran to get the doctor because she said "These are so deep I can see her bone." The new doctor told us he could do need skin grafting, but he decided upon a more conservative, slower approach. It took her legs about 3 months to close over, and now she has 3 large scars to the knees and ankle. She wears burn garments 24 hours a day. She will likely need surgery on at least one of her knees, because this type of injury does not heal properly without intervention. The scars are so deep they will not grow with the rest of her leg.

    We had asked the first hospital for an apology and reassurance that they would accept the responsibilty for the treatment of her injuries. They refused to apologize or accept responsibility for treating her injuries. That is when dh and I decided to get another opinion about her wounds.

    Most disappointing (actually reprehensible to me) of all is that the doctors blamed my dd for these injuries. They said it was her fault because she "moved" in the traction. We find fault with this excuse on so many levels.

    How can you blame a 2 year old for "moving" when she was moving due to writhing in pain? If they knew she would be so severely injured by simply "moving", why didn't they offer more sedation and pain control? If she was able to "move" so much, was the traction actually put on properly? And of course, where was the primary surgeon while this was all happening? The new doctor also suggested they should have used pins for the traction rather than just glue the bandages to her skin.

    During an investigation, many of the hospital staff were quoted as saying things that simply weren't true. I am pretty trusting (naieve?) so I was shocked that they would try to cover things up like this, but now I have gotten used to it and have heard that is the reputation for this hospital.

    Everyone IRL has told us to sue them. We will not be suing. A lawyer friend has told us yes, they were negligent, but we would have to revisit the whole experience again and I am sure they would continue to say it was my baby's fault and otherwise continue to cover up, which I can't tolerate any more. As I said, they also are very powerful institution and I'm sure have the very best lawyers money can buy.

    We are ready to put it behind us. Yes, we are white hot with rage when I think of how she suffered there, and when I think of how they have never apologized for hurting her. But the anger was starting to eat away at dh and I. She is being treated at a Shriners' hospital now, which will accept no payment from us or or insurance. She can go there until she is 23. They have been wonderful to dd, and we have found healing in the care she's received there.

    Today, we sent off a letter to the president and VP of the original hospital, including photos of dd's injuries. (which thankfully we thought to take) We outlined everything that we believe led to her being injured, as well as the way the staff was "disingenuous" to say the least. (We can actually prove most of the dishonesty...to give an example, there was one interview with a physician where he went on and on about how he spoke with us at length on the night dd was admitted, blah, blah blah. We never saw the man, and actually, in dd's medical record, it was not him but another doctor who admitted her that night) I know they will probably file my letter in the trash, but I do feel like I have some closure now. I also cc'd the letter to the state department of public health, so at least there is proof that concerns were voiced about the level of care offered to my dd. I am worried that this will happen to another child and family.

    Anyway, just wanted to share (vent?) the rest of the story. We were hoping for some justice for dd, and it's obviously not the outcome we had hoped for, but I think we'll all be OK.

    Thanks for listening,
    Ann

  2. #2
    angeleena is offline INCIIDer - A Community Creator
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    Default Ann, omg! I am sooo sorry this happened to you

    and your baby girl. I cringed as I read it. I am sooo sorry. That sounds like a HORRIBLE hospital.
    I am glad that you wrote letters....omg

    I would personally sue them just to make sure they change their ways but then again, re-living it would be horrible.

    I am sooo sorry for you having to watch your daughter go through that. I am nearly in tears.

    Sending you good thoughts...

    -angi

  3. #3
    Restless is offline INCIIDer - A Community Creator
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    Default I have chills

    Quote Originally Posted by anniemc2000
    Some of you know that my younger dd had major surgery in April and May of 2006 to close her bladder. At the time, they also broke and reset her pelvis to pull everything together, and she had to stay in traction for 2-3 weeks. It's hard to describe, but she was literally hanging from her ankles in the traction. Her legs were each wrapped, then wrapped together, straight up in the air, hanging, and the rest of her body had to stay flat on her back. Being 2 years old, she was not pleased with this and also was writhing in tremendous pain. Her epidural was not effective, and she was never really sedated. Her surgeon never told us he would be away, but he left on day 2 after the surgery for 10 days of vacation. Now, mind you, my dd's surgery was extremely rare. It is only done on newborns about 5 times a year at this major hospital, and her case was even more unusual because she was 2.5 at the time of surgery. We have no idea why he scheduled her surgery when he wasn't going to be there to take care of her afterward, and no idea why he didn't tell us this ahead of time.

    The residents checked on her while he was gone, but no attending surgeon saw her for the 10 days while he was on vacation. The day her primary doctor left, she slipped out of her traction. The resident took down the traction to re-do it and saw she had several large wounds on her ankles and knees where apparently the bandages literally tore her skin away. It looked horribly painful.

    The resident re-hung the traction and she stayed like that for 10 more days. She was in agony. We asked if they could do anything else to keep her wounds from getting worse but the resident was unsure. When the primary doctor returned, he looked at the injuries and immediately took her right out of traction. I wonder if he had not been on vacation if he would have done it sooner.

    Long story short, when we took he for another opinion after she got out of the hospital several weeks later, her new doctor told us her "wounds" were actually third degree "friction burns" caused by the traction bandages. In fact, the nurse practitioner we saw at the new hospital (which is a burn hospital) ran to get the doctor because she said "These are so deep I can see her bone." The new doctor told us he could do need skin grafting, but he decided upon a more conservative, slower approach. It took her legs about 3 months to close over, and now she has 3 large scars to the knees and ankle. She wears burn garments 24 hours a day. She will likely need surgery on at least one of her knees, because this type of injury does not heal properly without intervention. The scars are so deep they will not grow with the rest of her leg.

    We had asked the first hospital for an apology and reassurance that they would accept the responsibilty for the treatment of her injuries. They refused to apologize or accept responsibility for treating her injuries. That is when dh and I decided to get another opinion about her wounds.

    Most disappointing (actually reprehensible to me) of all is that the doctors blamed my dd for these injuries. They said it was her fault because she "moved" in the traction. We find fault with this excuse on so many levels.

    How can you blame a 2 year old for "moving" when she was moving due to writhing in pain? If they knew she would be so severely injured by simply "moving", why didn't they offer more sedation and pain control? If she was able to "move" so much, was the traction actually put on properly? And of course, where was the primary surgeon while this was all happening? The new doctor also suggested they should have used pins for the traction rather than just glue the bandages to her skin.

    During an investigation, many of the hospital staff were quoted as saying things that simply weren't true. I am pretty trusting (naieve?) so I was shocked that they would try to cover things up like this, but now I have gotten used to it and have heard that is the reputation for this hospital.

    Everyone IRL has told us to sue them. We will not be suing. A lawyer friend has told us yes, they were negligent, but we would have to revisit the whole experience again and I am sure they would continue to say it was my baby's fault and otherwise continue to cover up, which I can't tolerate any more. As I said, they also are very powerful institution and I'm sure have the very best lawyers money can buy.

    We are ready to put it behind us. Yes, we are white hot with rage when I think of how she suffered there, and when I think of how they have never apologized for hurting her. But the anger was starting to eat away at dh and I. She is being treated at a Shriners' hospital now, which will accept no payment from us or or insurance. She can go there until she is 23. They have been wonderful to dd, and we have found healing in the care she's received there.

    Today, we sent off a letter to the president and VP of the original hospital, including photos of dd's injuries. (which thankfully we thought to take) We outlined everything that we believe led to her being injured, as well as the way the staff was "disingenuous" to say the least. (We can actually prove most of the dishonesty...to give an example, there was one interview with a physician where he went on and on about how he spoke with us at length on the night dd was admitted, blah, blah blah. We never saw the man, and actually, in dd's medical record, it was not him but another doctor who admitted her that night) I know they will probably file my letter in the trash, but I do feel like I have some closure now. I also cc'd the letter to the state department of public health, so at least there is proof that concerns were voiced about the level of care offered to my dd. I am worried that this will happen to another child and family.

    Anyway, just wanted to share (vent?) the rest of the story. We were hoping for some justice for dd, and it's obviously not the outcome we had hoped for, but I think we'll all be OK.

    Thanks for listening,
    Ann
    I have chills reading that letter. Your poor, poor baby -give her a gentle hug from me.
    Unfortunately, unless there are consquences, I don't know how they will interpret your letter. If you don't want to sue, but want maxium impact, send a copy of everything to your State Dept. Of Health -Licensing, as well as the Joint Commision (which is supposedly the cream of the crop accrediting agency for healthcare). Here's the link: http://www.jointcommission.org/

    BW

  4. #4
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Thank you- we filed reports with the Joint Commission

    and the DPH in our state. JCAHO doesn't share the results of their investigation with you, so I don't know if they cited anything. The hospital also violated the federal privacy act (HIPAA) twice- first by sending us another child's detailed record, and another time by writing up yet another child's examination on a paper which also listed my dd's personal information. They would not release her medical records to us or to her new doctors. A month went by, and still no records. Her new doctor told us he could not take care of her without them releasing her records to him. We had no choice but to file a complaint. The records were released shortly after we filed with dph.

    The state investigation is ongoing, but the state appears very reluctant to reprimand them. They are consistently listed as one of the top 3 children's hospitals in the country, and to be honest, the state appears intimidated by them. They accept their testimonies at face value even if they contradict what is written in her medical record. It's all extremely frustrating and actually disgusting the lengths they have gone to to cover up the clinical errors they made.

    We have also asked the Board of Registration in Medicine to review the actions of the primary surgeon.

    I fear that a lawsuit would bring out even worse in them- I see them dragging up dd's past (we adopted her) and continuing to say it is her fault.

    Thanks so much for your support. I just needed somewhere to vent all of this.

    Ann

  5. #5
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Thank you so much

    I really appreciate your support!
    Ann

  6. #6
    Val. is offline INCIIDer - A Community Creator
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    Default

    Wow, I have TEARS reading your story. I can't even imagine the anger and frustration and sadness you must feel over the whole situation. We had situations with doctors where our son nearly died, was in significant pain which could have been avoided, but thankfully there are no permanent physical or mental scars for him. Still it haunts me so I cannot even imagine the place you are in with this. I hope that what you have done truly brings you emotional closure and peace. I can't help but wonder if I would take it even further, but certainly that is your decision.

    Hugs!
    Val

  7. #7
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default Thanks Val

    I know you understand. The thing is, my older dd also had very serious, complicated surgery at another major hospital when she was the same age. It was extremely touch and go- they had incredible difficulty keeping her ventilated, her lungs collapsed, her airway was unstable. She certainly did not like lying there intubated, but they were really on top of it and she was very well-sedated in the PICU. Yana was rushed from the PICU to the floor. They told me "we need her PICU bed for someone else."

    The difference is that the director of the PICU for my older dd repeatedly explained everything to us, and he also told us "she is in critical condition, but that is why she's here and we're doing everything possible to help her." One day the resident missed something with her and the director was all over him, explaining that she was "the sickest one here, we need to watch her carefully" etc. That is the role of the supervising doctor. Not to be on vacation!

    Her primary surgeon was there to check on her each and every day. He refused to schedule her surgery around Thanksgiving because he knew he would be away for the weekend.

    In Yana's case, it feels like the doctor(s) abandoned her. Seeing her in such agony...then they blame her. It was reprehensible.

    Thanks for the support!

    Ann

  8. #8
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    Default Oh I am just breathless reading your post (m)

    That is one of the saddest stories I've ever read. One thing stands out to me...and that is that no attending ever saw your dd for the 10 days the surgeon was out of town...only the residents.

    I am pretty certain that is a case for negligence in that this does not meet the minimum standards of care. A lawyer could better clarify that, but in a million years I cannot fathom that an attending would not be there to supervise her care. Not one attending? I can see why you'd not like to relive the situation, but I'm fairly certain you have a good case here, even one that a "top-notch" firm might take pro-bono.

    That said, only you as her mother know what is best in this situation and my heart goes out to all of you. I hope you find some closure, you cetainly deserve it after all you've been through.

    Hugs,
    Karen

  9. #9
    Val. is offline INCIIDer - A Community Creator
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    Default

    I completely agree that while both were difficult situations, the doctors and hospitals can make all the difference. We too had Tanner in two different hospitals and our experiences were night and day in his treatment, our treatment, and the whole experience. In fact, in the second hospital, we checked him out at 1am ourselves. Many hugs!!

  10. #10
    anniemc2000 is offline INCIIDer - A Community Creator
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    Default It's unthinkable, isn't it?

    We never saw an attending surgeon, but figured he must have come in while we were asleep or something. Only when we got her medical record did we realize no attending surgeon ever examined her over the 10 vacation days. There is no documentation of any attending surgeon seeing her or supervising the residents for that time period in her chart, and that's exactly when she was hurt.

    We are reluctant to sue also because of how ugly they've already been, blaming dd and trying to cover up by being dishonest. I am stunned at the physicians' dishonesty, but I am naieve I guess.

    I fear they would drag out my dd's past history, as we adopted her at 20 months old. It's been an incredibly disappointing experience all around.

    I really appreciate your support. It means so much to me.

    Thank you,
    Ann

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