A story of premature birth and the NICU roller coaster

Anger and outrage

on October 2, 2012

I don’t know how to channel my rage at this hour. We have made so many attempts to seek legal counsel to investigate our sons case ,as we believe its a wrongful death case. This won’t bring my son back ,so we recently decided to let it go and move on. The firms we contacted all denied us saying the same thing….they did and excellent job of covering their butts…referring to the hospital…in a professional and legal manner on legal letterhead of course….”we regret to inform you that we are unable to represent you at this time”etc. So the thing is ,that when my son died and we saw the death certificate that they were supposed to file, it said certain causes of death. I said to my husband, they are either really stupid for admitting these certain things ,or maybe they aren’t worried because its somehow supported medically. So as we waited for what seemed like forever to get the death certificate in the mail…it finally came and it was indeed different, you might say it was “doctored” just as his medical records were when we received those( the records were like pulling teeth to get as well). We were dumbfounded . After many months ,we decided it wasn’t healthy to keep chasing the legal end of things only to find we were stuck and at the mercy of these people. We decided as a last ditch effort at the advice of a lawyer ,we would just contact the hospital to get a copy at least of what they filed. After waiting a month or more ,after we were told by medical records that the Doctor refused to release this information, my husband called the city,the hospital again and legal counsel and found out that not only will they not release it, but it was in fact amended. You can imagine I have smoke coming out of my ears at this point. The thought of our fears that these drs causing our sons untimely death is now all but admitted by this Doctor saying ” We don’t have to give you anything, it’s for our records only, you don’t need it” . In all my days I have never known someone so cruel and without a conscience. When they asked us to pull the plug, this same man looked us in the eye and said, we can treat him as he will live like you request but we are not going to ,because we feel he will just keep getting better and than worse. What does that mean!!!!! I know if there is a terminal diagnosis or a solid reason that the Drs feel you should give up ,that they will try to guide you to do what they feel is best for the patient. The fact is they couldn’t and wouldn’t give us a reason other than to boldly look at us crying and say, sorry he’s just to sick, you need to let him go. It makes me sick thinking that I did the wrong thing by trusting these people with my sons life. In the end this Dr just sat and stared at me literally, waiting for time to pass because he knew my son was dying. He didn’t have the decency to tell us what was happening…he agreed to change out his femoral line that supposedly had clotted up, but then just sat there staring at me. He never changed the line. It would ruin his story ,to say he was killed by a blood clot that traveled from that line, which by the way was proved not to be the case when they did a test for it. He did have two horrible infections that they delayed treatment on and he was overdosed on diuretics which they knew would shut down his body. The infections led to sepsis, coma, shut down of his organs and after a few rounds of chest compressions…death. We have many theories…some based on assumptions for things we researched but mostly based on fact ( gathered from asking questions to kind nurses and interns and medical records we got before they were later altered.)We refer to him now as ” the closer”…. The guy they send in to finish the job…convince the parents to let their son go…if they don’t agree ,we do it anyway because we can. I know this may sound accusatory and diluted but rest assured I speak the truth. I have more detailed information about what they did or didn’t do for my son that will blow your mind. They make no apologies for mistakes that were made either. They said things like ” well he was premature so he didn’t have a fighting chance, you knew he could die” . To this we replied….aren’t you in the business of saving lives…this is the NICU isn’t it. They said ” We are a teaching hospital, we are allowed to make mistakes…we are still learning, and besides…Neonatology is a relatively new field.” I know preemies are at risk, but when my son was supposed to come home and then suddenly something mysterious happens(see previous posts) and they act like we are crazy saying, at 3 months) you always knew he could die ….this is no comfort and very unprofessional. The thing is ,some kind hearted staff there ,told us things were amiss or guided us to asking about certain things. One person directed our attention to key factors that meant…yes they made fatal mistakes with your son, he doesn’t have a chance unless you get him out of here. They made sure he didn’t leave, we believe ,so that if God forbid he suffered major problems down the road like mental retardation or cerebral palsy etc that we couldn’t pin it on them. One more thing…this is appalling…they told us several times that diagnosis like cerebral palsy, deafness, autism, mental retardation etc essentially are reasons to pull the plug, saying these children have no quality of life and aren’t productive members of society. This blows my mind being that I work with Autistic children,some of whom have cerebral palsy, muscular dystrophy , downs syndrome and other diagnosis. These children are very vibrant and are valued as human beings. Well I have rambled on enough for now but I am once again unsettled with my sons passing. I pray for Gods guidance and peace, that’s all we can do anymore.


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