Our nightmare started:
In February of 1996, Dave was 13 1/2 years old. He suddenly started to complain about 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. I thought he must be really constipated. He did eventually pass a small amount of stool, but the discomfort and that feeling were still there. Then 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.
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 came20home. 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 roller blades 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 Birthday gift ever....I love you...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 su rgery 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 su rgeon 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 ch eck 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".
On June 21st (Saturday), they operated, the surgeon came out and said, "They found a lot of scar tissue around the colostomy, and a lot of adhesions". He had a look on his face of bewilderment. I asked, "What you never saw this before?" he said, "No, not in someone his age, in people that are older, yes". I said, "What does that mean?". He responded, "I don't know!". That's as far as he went to find out "WHY". (This is when my mother's intuition came flooding through me - I was filled with such dread, it was an unbelievable feeling). They brought him back to his room without the NG tube in. The nurse couldn't believe that, she went out to get the surgeon - he proceeded to put the tube down his nose, while he was awake. Two days after surgery (Sunday & Monday), he developed a fever at times it went to 102. They just gave him Tylenol. It was a whole another day, before they started giving him antibiotics. His surgeon said, "He has some infection, the bowel is tight, where we put it back together". He continued to have a lot of pain. On the 4th day (Tuesday), they gave him a suppository, he did have a small bowel movement. On the 5th (Wednesday) morning (at 5:30a.m.) liquid bowel movement coming out of the incision saturated the bandage - stool was running down his leg (he was covered). Dave was20so panicked as was I. I tried to ease his fear - All he kept saying was, "Oh my God Mom! I'm gonna need more surgery". (Inside I was ready to explode emotionally). He also had incontinence of his bowels, from then on. The surgeon came in, said "It's a fistula, it will close on it's own". I said, "If it's leaking like this on the outside, isn't leaking on the inside?". He told me, "No, the bowel is close to the skin, it's not leaking inside". He just put a colostomy bag over the incision. (I was half relieved and half panicked). The surgeon never did one single test to rule out the possibility of the colon leaking inside. He also removed the NG tube, and said he could have some liquids (the day before there was reddish/brown liquid that filled the jar from the NG tube). That night he had projectile vomit. (I just had such a feeling that something just isn't right, my first thought was a perforation) but every time I would say "Something just isn't right"-the surgeon would say, "He's been through a lot, he had a lot of adhesions, it's going to take time". (I tried to believe him, he was the doctor) The surgeon's kept saying, "That's because he had some liquids, if the nausea continues we will give him a shot for that". On the 6th day (Thursday), he was still trying to walk. (David always listened to everything the Doctors said, he always trusted them, they were telling him, "you just have to walk, this will relieve you pain/relieve the gas." As sick as he was, he would=2 0walk till he couldn't anymore. He believed that by doing everything that they said, he would get better. But, these doctor's were "NEVER" listening to what he was saying to them!!!! As we were walking, we heard this large movement of gas (very loud and fast) that came right out filling the colostomy bag. He had to run to the bathroom. He was nauseated all the time after this. They gave he the shot for nausea, then the surgeon said, "All the pain he was continuing to have, was because he wasn't taking any pain medication". So, he ordered codeine, for pain. (this is now 6 days after surgery). I said to the nurse, "I want an x-ray or something, there is something wrong". Later that night they did one (Dave couldn't even stand to have a vertical x-ray done). The surgeon said, "It shows air in the colon, but a part of the small bowel is dilated-that's all", "I think he's getting better". I thought, "I was losing my mind". I was saying, "Something isn't right, he's having so much pain, he can hardly even walk". Every time, he would say, "No, he's doing good, it's going to take time, he's been through alot, he's had alot of adhesions" and so on. (I was so torn, I'm not a doctor, I'm only a mother, I kept pushing my feelings away, doubting myself). I happened to see his medical records, were his blood pressure had been increasing from the day before (Thursday morning 115/63 - elevated through Friday 151/96). I questioned the nurse about his pressure, she said, "Well, if he's in pain,=2 0that would elevate it. (I felt like, the surgeon, nurses and I were all on different pages- they weren't seeing what I was, so I thought I must be over reacting (a nervous mother-as I had been called in the past) they know what symptoms/problems to look for, they would see it). So, my son continued to get worse.
On the 7th (Friday) day, Dave was up almost the whole night. He vomited, nausea, couldn't get comfortable, restless and was in pain across the right side under his ribs, down the middle of his stomach, and pain radiated to his right shoulder blade area. I was putting hot compresses on his sto= mach, trying to give him some relief. The surgeon comes in, My first question was, "What did the Radiologist say about the x-rays", he said, "About the same as what I told you". Dave and I are telling him he's in pain, the shoulder blade, he says, "It's probably a muscle spasm, just rub it". He even said, "He's doing well, your getting better, you can even go outside today, your stomachs soft, just take some pain medication". With a half-smirk on his face, like Dave was exaggerating his pain. I told him, "He's having so much discomfort, I don't think he wants to go outside". "Is this normal?" He said, "He'll be fine!". He ordered another suppository because he had stop having bowel movements at 6:00 p.m. the night before. Then the nurse said, "Well maybe some of his friends can come up and see him", I just looked at her, "Like, are you crazy!", then I said, "Dave isn't=2 0in any condition to see his friends". She didn't have clue!!!
Then the surgeon came back about 1 hour later, and said, "He wanted to put a PIC Line (central line) in, for nutrients". That's all he said to me. I was really very uncomfortable now, with this whole situation. I definitely wanted to transfer him to the Philadelphia Children's Hospital, so at 11:30 am, Friday (before the PIC Line is placed). I called the pediatric surgeon that I had taken Dave to see. I told him, "Dave's in a lot of pain, the incision started leaking bowel movement (almost 3 days ago) he said, "That's not good".(my panic intensified, I was so confusion and doubted myself, what do I do). I told him he is restless, he can't get comfortable, he's been vomiting, he's nauseated, now they want to do a PIC Line. I want him transferred up there". He told me, "To let them do the PIC Line, it will only help him, if he is no better, then we would transfer him". Reluctantly, I listened to his advice, because he was all I had left and at the time, I trusted him.
The PIC Line was scheduled for 1:00 p.m., they gave Dave a shot of Valium. This was unbelievable, I had to hold his head up, as we went down stairs, he was so drugged. I thought he looked a little jaundiced (but I thought "No!!!, it's probably just my imagination, at this point I was shifting between pushing my feelings and thoughts down, to complete nervous breakdown) - because the surgeon and the nurses weren't acting like an ything was wrong, and even telling me so. After, we got back around 2:00pm, he was sleeping. He had finished his IV fluids downstairs, the nurse still didn't have him hooked up to another bag. After, about 30 minutes my husband and I went downstairs for about 20-30 minutes (we needed to get a breath of air). We were going to grab something to eat, but (my intuition kept bothering me). I wanted to call up to see how Dave was, if he was still sleeping. The girl answered, she said, "Dave just rang for the nurse, but she is busy with someone else"(there was only one other patient on the whole floor). (It's about 3:00 or 3:15 p.m.). I said, "I'll be right up", when we walked into that room - He was sweating profusely, very pale/ gray/ jaundice looking - he seemed out of it, he had to go to the bathroom, so we took him. After about 15 minutes, we were walking back to the bed, the nurse finally came in. I said, "Look at his color, he's sweating profusely, something's really wrong". On the way back, Dave totally collapsed in my arms and was unconscious - I screamed for my husband, he had to grab him and carry him to the bed. The nurse ran out to call the surgeon - he only ordered blood work, that's all!!! He still wasn't hooked to an IV or the hyper-alimentation for the PIC Line. The nurse never gave him oxygen, or did any procedures for the obvious shock that he was in. I truly had a nervous breakdown (I lost my mind at that point-I couldn't function, I paced like a caged animal - I almost jumped out the window) - I thought my son had died, right before my eyes. But, in the back of my mind, my thought was, "She's getting a doctor for my son". My husband was with him, reviving him with a cold towel. (After Dave's death from his medical record: the nurse tri= ed to write over the blood pressure numbers (when she finally took his pressure)-what was underneath was something like 90/40 - his temp: 95, pulse: 156, respiration: 28 - no pulse oxygen numbers documented). His pressure had been running 150/96 before.
It took 1 hour to draw his blood. My husband in between taking care of our son and trying to comfort me, found time to call my sister-in-law to come right away to help me. When she got there she went in to see Dave. She told the nurse that his breathing looked rapid and shallow, he was semi-conscious, in and out and he looked jaundice, she said, "He's fine, "He's only a little pale under his tan", that's all. (HOW RIDICULOUS IS THAT!). He still wasn't hooked-up to an IV or Hyperal at this time (now it's between 4:30 & 5:30). She still hadn't gotten a doctor in there to examine him. My sister- in-law, was trying to snap me out it - she had given me at least 2 Xanax - she said, "YOU HAVE TO GET DAVE OUT OF HERE, RIGHT NOW!!!". After she said that, we ran for the phone - I called the Philadelphia Children's hospital, spoke to the same surgeon (I still cannot remember to this days what I said) but I made arrangeme nts to have the Helicopter transport come pick-up Dave. The one thing I do remember was that he told me that I had to let the other surgeon know - because of protocol. The nurse got him on the phone, I said, "I'm transferring David to Children's Hospital, this just doesn't make sense, you've been telling me for three days now, that he was just fine, what the hell is going on?" He said, "Obviously he's bleeding from somewhere". This is when I slammed the phone down. It's now about 6:00 p.m. I told the nurse, "I'm transferring him to Children's by chopper, to make whatever arrangements that she had to. I was half- functioning at this point. The nurse said, "Don't you want to wait 2 more hours to see what his blood count is then"? His blood count was already 9.2. "I told her to take another blood test, now"! We're still waiting for a doctor, to examine Dave. He was still vomiting.
Around 6:15 pm, David passed out again, just trying to sit on the edge of the bed to urinate. My husband went crazy, yelling to "GET A FUCKIN DOCTOR IN HERE NOW!!!!!! WHERE THE HELL IS THE DOCTOR????", the nurse went running for the surgeon on duty at the hospital, which took another half hour to 45 minutes for him to come to his room (7:00pm). As soon as he saw Dave, he yelled for, "BLOOD"!!, "STAT", "A SAP", - my son was dying this whole time. And the nurse did nothing!!!!!!!! The blood that was "STAT" wasn't given to David until almost 8:00 p.m., almost 1 hour later (his cross and type was documented). David didn't get the immediate emergency medical attention that he should of had, this whole time.
His surgeon finally decided to show up, at 7:55 p.m.(4 1/2 hrs, after Dave collapsed the first time). Just before the chopper arrived. The surgeon, "NEVER" said one word to us. We saw the Children's transport team, we never felt such relieve. Some one, who really knows, "What the HELL they are doing". When he got to Children's, they stabilized him - had complete sepsis throughout his body, the anterior of the sigmoid wall had opened entirely, they discovered, impressive hemoperitoneum, a very large subcapsular and interparanchymal hematoma on the liver, free air and collection of fluid, several units of clotted blood, throughout his peritoneum. There were 4 perforation of the small bowel, abscesses, blood clots. "Did all this just happen overnight?" "I don't think so"!!!!!.
The next morning they did surgery for 5 1/2 hours. (I have no idea why the choose to wait until morning to operate on him - it was now 4 days that the bowel had been leaking inside him). He pulled through, but what followed was 10 excruciatingly painful days, with something going wrong everyday - fluid developed in his body, then a chest tube to drain the right pleural effusion (lung) that developed, then an abscess on the liver (E-coli) had to be drained, raging fevers. (In a person without a connective tissue disorder - the extensive contamination of the peritoneum cavity from the= small/large bowel20leaking. This alone can produce clotting problems leading to bleeding, the amount of fragility of the small bowel/intra-abdominal structure would occur because of the amount of sepsis present. Infection can erode the blood vessels). With a connective tissue disorder, David was fighting a losing battle!!!! But, we never gave up hope…NEVER.
As soon as I saw Dave he said to me, "Mom, I really need a vacation?", I told him as soon as he gets well....we would take him to Orlando.... for the best vacation ever. Then he told me, "The surgeon really screwed up on me Mom, didn't he?", "I hate him for not listening or believing me", "Why didn't he do something!". I made my son a promise that day, that I would take care of everything. He even asked me, "Mom, we are going to get a lawyer, aren't we"? I told him, "Don't worry about that now, I will make sure that all those Doctors, will never forget your face or mine, or what they didn't do for you". You can believe that.....
I spoke with the chopper nurse, she said, "When we got your call, we had never received a call like that from a mother wanting her child transferred, it's usually from a doctor, "so we came right away". We were in a whirlwind, we had no idea what the hell was happening to our son. My pediatrician had gotten back from his vacation, and called Children's ICU - that's when he told me, "That they think Dave has Ehlers-Danlos Syndrome". "WHAT!!! What the hell is that?" - his words back to me w ere, "It's what the circus people have"... "What???? I said"... he than proceeded to tell me, "Where they can bend in a pretzel"... "David can't bend in a pretzel!!!"...what are you talking about??? I was in shock, I just couldn't imagine his words and what the hell this all meant. Then, an overwhelming feeling flooded my being, my soul, Oh my God! they are looking at my son as some kind of a "circus performer...a circus freak". This was the same day that a Geneticist had finally been called in to examine him, all she did was really look/examine his obvious symptoms, and she know he had a connective tissue disorder called, Ehlers-Danlos Syndrome Vascular Type (IV).
It wasn't until Saturday, one week later and 2 days before Dave's death - that we were brought into a conference room - the geneticist and a doctor told us, "We think your son has Ehlers-Danlos Syndrome -Type IV". "If he survives he will be very limited - he would never be able to play sports, never have any rough physical contact". I asked, "How many people have this?" She said, "There is one other person that we know of". I was floored.. ...destroyed. Then she said, "At any time anything can happen, because of the fragility of tissues, skin, blood vessels, organs". "Are you telling me, "That I will never walk out of here with Dave?" " I can't say, will have to wait and see, hope and pray". My husband had to leave the room. I sat there completely overwhelmed with emotion, a sword pushed into my heart. After, they "RIPPED" my heart out and destroyed our world, with their words. I knew I had to pull myself together, so my son couldn't read my face and see such torment - for he knew me so well. I made up my mind that, "No one", was to tell my son, that he had EDS Type-IV, he had enough to deal with, he didn't need anymore!!! They had already took so much from him, already. Plus, his dream/passion had always been to play hockey - to someday be an ice hockey player!!!!!!!!! "NO ONE WAS TAKEN HIS DREAM AWAY FROM HIM, NO ONE!!! David never knew about EDS.
On top of "ALL", that was wrong with him, from "Neglect and Stupidity", from the surgeon's and my local hospital - then they tell me, he has this genetic disorder that he had for 14 years, which "NONE" of these educated and experienced DOCTORS, ever diagnosed. There were documented medical articles published in Surgical and Pediatric Journal's from 1994, 1995 - 1 yr. prior to Dave - a 14 yr.old and a 15 yr.old who had a perforation of the sigmoid colon in Ehlers-Danlos Syndrome...... there's no excuse.....for= not keeping up with important medical information....that's part of their job....."The presence of a perforation in a young patient, without a predisposing factor such as neoplasm, diverticulitis, colitis, steroid use, or inflammatory bowel disease, "MANDATES THE CONSIDERATION OF EHLERS-DANLOS SYNDROME".
Also, surgical treatment of bowel perforation in EDS differs from that in
most other patients because perforation s tend to recur and anastomoses tend to breakdown. Surgery has to be done more meticulous, with no stress or tension put on internal organ. Restoration of bowel continuity is not recommended because of high incidence of recurrent perforations. Permanent colostomy, despite the young age of some patients, has been recommended. My son would still be alive! Can you imagine what it does to you, what it feels like; to have to watch helplessly as your child is suffering before your eyes, because Of "DOCTORS" that didn't do their "JOBS". To have your child that you love above "ANYTHING", and would give your life to save: ask you..."Mom!, am I going to die?????"
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?"..........When the doctor's let us back in to be with him, all I could say was, "Dave, I love you so much, please don't give-up? With an oxygen mask on his face, he reached over took off the mask and said, "Mom!, I'll never give up... NEVER!!!!! And he never did!!!! He fought so hard to live....but, his body was to badly damaged.
The Geneticist had written in their consultation that if there was any changes to call them immediately. As all the doctor's were in his room trying to save his life - In walked 2 Geneticist that came into the room to WATCH what happened to Dave as he was dying. My anger and the thought that (his father and I couldn't be in there with him at that moment) they were all looking at him as someone who had what the circus people had, "a rare disorder" - just sent me over the edge. I flipped, I told the nurses and the social worker, if they can't save my son's life - then "WHAT THE HELL ARE THEY DOING IN THERE???" That is my beloved CHILD.... "OUR SON", his name is David Bowen... NOT...VASCULAR EDS. The next thing I saw was them walking out with the heads down.
To watch your 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 abdominal incision 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 easil= y seen on his chest, neck, abdomen (I questioned this when he was born, and throughout this life - 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 attorneys20to 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, all 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 received from
them 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 - they have to be aware and know that they have to be their own healthcare advocate. Don't rely solely on the medical community (especially the doctors and surgeons) to be able to diagnosis and treat you correctly. And DON"T be afraid or embarrassed (you have every right) to question ANY doctor, surgeon, nurse, any medical professional and expect answers back. If those answers don't make sense, or there are none - than you have to find them yourself. You can ONLY receive quality "appropiate" medical treatment/care, when you know ALL the facts concerning your disease or disorder - so educate yourselves, do your own research, try to find those answers in order to gain that knowledge. We as patients tend to expect that the doctor's that we are paying, will be able to fully take care of our healthcare needs and diagnosis us correctly. Sadly, some fail at this job.
This enormous lack of knowledge and ignorance among those in the medical field of how to diagnosis EDS is truly horrific, as you can see. David is just 1 of many families who have experienced almost the same tragic events. The other failure is doctor's unwillingness and/or laziness with NOT looking further for the correct answers...when they don't know them - NOT researching everything and everywhere in order to find those answers - and NOT referring a person to a Geneticist, when that doctor or surgeon sees something they never seen before, or that they can't explain or diagnosis.
Do you ever remember being entertained at the circus by a performer showing off his veins, colon rupture, blood, and bruises??? - Someone with "VASCULAR" Ehlers-Danlos Syndrome (EDS) WOULDN"T be performing in a "circus". The majority of those with this type of EDS have very limited hypermobility of their joints and stretchiness to their skin....THEY CAN"T BEND IN A PRETZEL...and there's nothing entertaining about this horrific, devastating, disorder...NOTHING!
I found this after Dave's death - and it says it all...
Ex cerpt 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 medici= ne 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.
Through my work as an EDS Advocate, I've incountered some people 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 an EDS martyr (along with so many others) for some reason or purpose (that I will NEVER understand as long as I live). He was 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 lives20still, even after his death. For this we are thank= ful and proud - he was/IS a handsome boy, that was purely innocent, filled with such light and goodness....my heart...and...my soul....
I'll continue the fight for the sake of others, in my loving son's name - So that he didn't died in vain....goodness will prevail....
Cathy Bowen - David Daniel Bowen III's heartbroken mother...
They that "LOVE" beyond the world cannot be separated by it.
"DEATH" cannot "KILL" what "NEVER" dies... ~William Penn~