Discussions By Condition: Medical Errors

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

Posted In: Medical Errors 0 Replies
  • Posted By: Daves Mom
  • October 24, 2006
  • 06:17 AM

This is the story of what happened to our son, David

Our nightmare started the end of February 1996, Dave was 13 1/2 years old, he suddenly started to complain about some pain and a crampy feeling in his lower abdomen. He said, "It feels like I have to go to the bathroom, but it won't come out. He would usually have a bowel movement about every 2-3 days, sometimes it was large (log-like). I thought he must of been really constipated, so for the first time ever, I gave him a small fleet enema. He did eventually pass a small amount of stool, but the discomfort and that feeling were still there. Later he started to vomit and we went right to the hospital. He had a 1 cemimeter perforation of the sigmoid colon, with peritonitis. They had to do a colostomy, his surgeon said, "Because the small bowel was markedly inflamed. "He really wasn't sure why, but he made it seem like it was something he rarely saw before.

Dave progressed slowly over the next few days. When the surgeon's intern was taking the staples out after 8 days, the skin started spreading apart in the middle and bleeding like a fresh wound. The intern turn to ask the surgeon, "Look at this, is this OK?" The surgeon said, "Oh yeah!, that's fine, we'll just put some steri- strips on it." It was a very long and painful recovery, but after 9 days on March 3rd 1996, he came home. I had to take him back to the surgeon's office 3 times in the first 2 weeks - because of his complaints of extreme gas pains, loss of appetite, more weight loss, pain under his right rib extending to his right side, a pulling sensation, and discomfort at the bottom right lung area, he felt like he couldn't take a deep breath. Every symptom, was just fluffed-off as symptoms from the surgery. "It's going to take time", his surgeon would say. Plus, he continued to lose more weight while he was home (he was down to about 90lbs, from 110lbs). The 5 1/2 inch vertical incision took so long to heal, it was raised and the width had spread to about 1 1/2 inches. The surgeon even had to cauterize one spot, twice. But he did finally heal, it was a long slow recovery. We all worked so hard to build him back-up. Dave pushed himself and endure so much to get back his health.

March 31st was his 14th birthday, all he wanted was to be able to put his rollerblades on, and skate around the driveway. Of course I couldn't say no to him. So, his father and I held him by each arm, guiding him so he wouldn't fall. We laughed, the smile on his face, he was just so happy. He said, "That's the best gift ever....thanks Mom"....

There was a family history of diverticulitis (grandparents), but Dave never had any problems with it . I told his surgeon's his medical history: he had large bowel movements, a torn ACL ligament at 10 years old, and surgery as an infant to repair double hernias and hypospadis. Plus, my pediatrician was also involved, he had the rest of the his history. The only thing the surgeon's could conceive was that someone had stuck a sharp objects up his rectum, to perforate the sigmoid bowel. Can you imagine! So, the one surgeon called in a Social Worker to speak with my husband and I to rule out child abuse... The surgeon didn't even have the decency to tell us himself, he had my pediatrician tell us. I told the pediatrician, "Fine, I'll talk to her and rule this out in their minds (we have nothing to hide) then you and all his surgeon's better find me the reason "WHY!" this happened". The Social Worker then had to speak to Dave by himself in his hospital bed, recovering from emergency surgery. "Did anyone do anything to you?", "Did your mother or father rape you?" were some of the questions she asked him. She did concluded that there was "NO" evidence of abuse here. Needless to say, they never did look for other possibilities - they were still stuck with this conclusion. Later when I read Dave's medical records, I found that the
surgeon told the social worker, "To sit tight with your assessment". What does this say!

When I questioned the surgeon as to "Why did this happen?", "What could of caused this perforation?", he responded, "Well, I wouldn't be giving him anymore enemas!" - This really p***ed me off, I could of lunged for his throat. "I told him that the other surgeon said, "There was no way a small fleet enema had cause this perforation in the sigmoid colon!" Plus, he had the symptoms before the enema was even given! Then, he said, "Why worry, he's put back together!". I was just so shocked, is this something a skilled professional surgeon would say to a mother who almost lost her son? I told him. "I needed to know why my son almost died with a perforation and if this could happen to again. " You would think that he would want to know that answer too, wouldn't you? I kept questioning them, but received no answers.

My pediatrician told me he had tried to find some answers - through the Pediatric Diagnostic Book (the "Red Book") but, that didn't lead him to anything that would give him an answer - he called the Philadelphia Children's hospital, and was told by a pediatric surgeon, that they had 2 prior cases of spontaneous bowel perforation (but had no diagnosis). I asked my pediatrician to make me an appointment with this pediatric surgeon. On April 5, 1996, I took Dave there with all his records and x-rays, he looked at him and examined him. His conclusion, "It was probably a congenital diverticulum". He chose to use conjecture, I guess because of the family history. He never offered another possibility to explore, and never even mentioned a evaluation with a Geneticist. After the appointment, Dave turned to me and said, "See Mom, now you can stop worrying - I told you there was nothing wrong with me".

My pediatrician said, "That the surgeon didn't see any evidence of diverticulum". All I knew, was that I wasn't getting any answers/ help from his surgeons' as to why he developed this perforation. I did received what I conceived as a possible answer, from someone that I blindly trusted as an expert with more knowledge then these other surgeons...from a Pediatric surgeon.

The one thing I never received from all four of these surgeons, was a recommendation to see a Geneticist. Sadly, this is all it would of taken, to diagnose him. Especially, when none of these surgeon's could give me a confident diagnosis. They only gave me the false perception that it couldn't be anything that horrific, or all these educated doctors/surgeons would of know something like that. They told me he's healthy and he's fine. it probably was a one time event.

As the months went on, Dave eventually was back to doing everything he was before. He even gained all the weigh back, even a little more then before the surgery. On June 20, 1996 (4 months later), he went back in to have the colostomy reversed. It was the day after he graduated from 8th grade (the day of graduation I rushed him over to the church, for a special blessing-an anointing of the sick). I ran into my pediatrician at the hospital. He said, "He was going on vacation the next day", I told him that I wanted him there to take care of Dave, also. He said to me, "Don't worry! I've have my assistant doctor check-up on Dave". (Well, he "never" came to check Dave, after Dave's death - I asked my pediatrician, "What happen to your assistant?", he said, "I told him to check on Dave, but for some reason he forgot too".


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