Discussions By Condition: Medical Errors

Tragically misdiagnosed-Ehlers-Danlos Syndrome Vascular Type (IV) continued 4

Posted In: Medical Errors 3 Replies
  • Posted By: Daves Mom
  • October 24, 2006
  • 06:45 AM

He was always worried about us, and about a little girl next to him that had a brain tumor, she reminded him of his little sister, Melissa. Even the morning when he was fighting for his life - David was concerned about us..... even at the last hours when he was fighting for his life - he wanted to know; "Is my mom alright?", "Is my dad ok?"... "Can you take my mom's watch off me and give it to her?"..........With an oxygen mask on his face, all I could say to him was, "Dave, please don't give up?".....he reached over took off the mask and said, "Mom!, I'll never give up... NEVER!!!!!

To watch you child suffering, struggling to breath from the blood that's crushing his lungs, and having to watch/ witness (with out being able to stop this nightmare). Dave had to watch as his abdomen split open (dehiscenced) before his eyes, with his blood running out of his body. The faster they tried to put the blood back into his body, the faster it ran out. Can you just imagine what David had to endure!!! Hearing the words "I'm sorry, but there's nothing else we can do for him....he's dying (the piercing of my heart). All I could do was stand there and hold my hand on his "HEART" (which continued to beat for 20 minutes) until it stopped beating, watching the life drain from my innocent son......(the sword that stabbed me through my heart). The life drained from my body as well (as if someone had opened a faucet on the bottom of both my feet) every feeling, emotion. I was screaming on the inside.... but no one could hear me.....

On the 10th day (Monday, July 8th, 1996), David died a horrible, devastating, incomprehensible, DEATH. This is the result of the lack of many doctors "NOT" giving Dave the appropriate medical care and diagnosis that would of prevented this kind of death... None of these doctors ever really "LOOKED" at Dave, because he had the "Classic Symptoms" of Ehlers-Danlos Syndrome-Vascular Type-IV, thin (translucent) skin with veins easily seen on his chest, neck, abdomen (I questioned this when he was born, I was told that some people are born that way, no big deal). Premature rupture of fetal membranes, low birth weight (4lbs.5oz.) double hernias, small build (25%), bruising, scarring on elbows/knees, torn ACL ligament, larger bowel movements, and even his toes were clawed. And the #1 symptom, a "PERFORATED BOWEL"!!!!!!!!

According to 4 Lawyers, "Reading the medical records(if it's not documented it never happened) it seems that your son was the victim of sloppy treatment and a misdiagnoses. It is clear that David's final weeks were tortuous and excruciating for him, and for you. The legal issues presented, the cost of litigation, and the potential for success, forces attorneys to make business decisions (MONEY) regarding this type of litigation". The presence of Ehlers-Danlos syndrome is the "ONLY" reason they won't take my case, because of underlining disease or illness (if he didn't have EDS, I would of had an EXCELLENT CASE). These lawyers even went as far as to tell me, "That a child and an elderly person, do not have much value in the court system." Isn't that just wonderful!!!!

So, these doctors and that hospital will "NEVER" have to take "RESPONSIBILITY FOR CONTRIBUTING TO MY SON'S DEATH", "FROM LACK OF PROFESSIONAL CARE & EMERGENCY MEDICAL CARE, WHICH HE DIDN'T RECEIVE." The first surgeon's total lack of Professional/Medical ethical responsibility, was so overwhelming - we never even received a phone call from these surgeons, the only thing we ever received from these surgeon's was a typed sympathy card in the mail.

I will keep telling David's nightmare (painful as it is - I made him a promise). So, that people will listen and learn, that they have to be aware, and know that they have the right to quality medical treatment/care - so educate yourselves, do your own research, gain knowledge. We as patients expect the doctors that we are paying, to be able to fully take care of our health needs. Sadly, some fail at this job.

I found this after Dave's death - and if says it all...

Excerpt from The Doctrine of Patient Care, by Allan H. Bruckheim,M.D.
Yet no care can be effective if the diagnosis is wrong, and no diagnosis can be achieved solely through the medium of technology. The art of medicine is essential to solving the mysteries of disease. This means considering patients as individuals, not merely as numbers in an equation. The physician must be able to hear the hidden meanings of the words patients use to describe their complaints, to comprehend the pain, anxiety and anguish that torments them. Statistic are of little value if the history is not taken with courtesy and consideration, or when questions remain unasked and unanswered. The confidence the patient places in the doctor must be met by the responsibility of the physician for the welfare of the patient. There are no machines for this interaction that forms the very basis of medical caring". "The true worth of medical care is found in the confidential relationship that exists between patient and physician. It is only when the unique qualities of the individual patient are recognized and nurtured by the caring physician that the rewards of medical care can be achieved, resulting in health and well being for the patient, and in the inner satisfaction that is the true motivation for the physician".
No truer words have ever been spoken. As a mother, I doubted myself - and what I was feeling, because I listened and thought a doctor would know if something was really wrong. I will "NEVER AGAIN" doubt what I felt, because I was the "ONE THAT WAS RIGHT!!!

Our anger is enormous, our pain overwhelming, we are completely devastated. The magnitude of which no one can really fathom, unless they too have lost a child in this way. It's only been through my anger, and the injustice which has been my driven force, that has taken me this far - and my overwhelming love for my son. I have used my anger in a positive way, it has given me energy, direction, a purpose. It alone, has kept me going (kept me alive). There are truly no words that could adequately explain how I feel. Everyday is a struggle, but I keep getting up every single day for my husband, my daughter, and David - to keep fighting EDS to bring education, awareness, and to try and prevent another family from having to endure what happened to my son and our family.

There are those who cannot understand, or comprehend my anger - some feel it's misdirected and unnecessary. All I can say to them, is this: "Just walk one day in my shoes".....and then we'll talk.

Unfortunately, David had to become a martyr for EDS (along with so many more) - the one that had to bring awareness, education, and knowledge to the medical community and a diagnosis for so many others. . He continues to touch many lives, even after his death. For this we are thankful and proud - he was/is a handsome boy, that was purely innocent, filled with such light....my heart...and...my soul....

I'll continue the fight for the sake of others, in my loving son's name.

Cathy Bowen - David Daniel Bowen III's heartbroken mother...
Associate Publisher, EDS Today
The Newsletter for, by, and about people
with Ehlers Danlos Syndrome.
In Loving Memory of my son, David
They that "LOVE" beyond the world cannot be separated by it.
"DEATH" cannot "KILL" what "NEVER" dies...William Penn

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3 Replies:

  • Cathy,I read all of your posts and am just sickened. I cannot imagine your pain and fury. My young mother was misdiagnosed and treated like crap and suffered a torturous, agonizing death...I thought that was unbearable, but to imagine something happen to my beloved child... just infuriating and heartbreaking. Why do doctors just let things go? Why don't they get online and do some research? I'm so sorry for your loss. You may save some lives by sharing your story.Vicki
    VickiP 1 Replies
    • November 1, 2006
    • 03:14 AM
    • 0
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  • Hi Cathy, I have read your story about David and to say I am stunned about the way the medical team treated him is an understatement. That is a nightmare no child or parent should ever have to go through. Those doctors could have at least apologised in person if not attended his funeral. They disgust me immensely. To not have to answer for what they have done to David is outrageous just because he had EDS 4 it is another crime in my opinion. If he had Down syndrome would they have been allowed to treat him with just as much neglect and disrespect? I do not think so. An underlying condition should not be an excuse for medical negligence. If I go to hospital for an operation and they make as many mistakes does that mean they are not to blame because I have EDS 3? Can they say, “Oops never mind she is disabled anyway with a genetic condition?” None of it should be used as an excuse for what they did wrong.
    Anonymous 42789 Replies Flag this Response
  • My family went through the same thing. My mom, uncle, and grand father all passed away due to vascular type ed's. We dident find out about ed's intill after my mother passed away. But the night my mother died she went to the er with horrible stomach pain. She tried to explain to them about the pain and how her brother and father died both died from anerysums. She told them her pain level was a 10 and she could bare the pain. They gave her a pain pill perscription and sent her on her way. She drove to cvs and collapsed in cvs. She then was taken to the er. My whole family rushed up to the er. We were there talking to her for awhile she was in alot of pain. the doctors were examing her and we again explained about my uncle and my grandpa. Not till my mother had a seziure and went unconsiunce again did they start to worrie. Then after about 4 hours of being in the hospital for the second time that night she was taken into surgery. After about 2 hours of surgery my mother passed away of a splenal aneruism. Later my sister and i were diagnosed with ehlers danlos. my sister has had one aneruism repair already. i am lucky enough to have not had any yet. i do have some other health problems. I had to have my acl repaired and have weak knees and joints. We did sue and win a little bit of money. i started a blog about my everyday life if you would like to read it. http://ilooknormal.blogspot.com/ also have you looked into getting tested for ehlers danlos because it is genetic
    carson2121 1 Replies
    • February 13, 2008
    • 07:52 PM
    • 0
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