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Path of my Life
by Karlin

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  • Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     11 y     15,390       14 Messages Shown       Blog: Path of my Life

     

       It was only recently that I was reminded of this matter at my birth, but I cannot help but wonder if it has something to do with my chronic pain condition, and other problems I have had all my life.


     Mother-Foetus Rh Incompatibility

      - The Long Term Complications?

       I will spare you the details of "how what why and who" concerning " Mother-Foetus Rh Incompatibility" except to say that it is a potentially harmful, even deadly, complication of pregnancy arising when the Mother's blood is Rh-,  the Father's blood is Rh+,  and the foetus is Rh+.  It is considered the most serious blood disorder in pregnancy.

       Because their blood mixes and circulates through the mother and the foetus as one, the mother's immune system can substitute for the undeveloped foetal immune system - Mother's  immune system protects the foetus.

       However, due to the fact that the Mother's blood is Rh- and Baby's blood is Rh+, that protection becomes "a deadly irony" because her "Rh- oriented immune system" attacks Rh+ blood... the foetus has Rh+ blood.

       As I am sure that you see, that's not a good thing for the foetus.

       What happens is that the foetal red blood cells "explode" and there are then fewer of them to carry oxygen to the foetal brain. Also, there is a lot of "waste product" from the dead red blood cells and the foetal liver becomes overloaded [hence, jaundice].


     What I Really Want to Say


       The issue I want to raise here is about THE OLDER cases of "Mother-Foetus Rh Incompatibility"- the ones before the 1970s, for example. {search "when tests...etc]

       That was before medical science discovered the tests and therapies they have now. The attention paid to "Rh incompatible newborns" shows just how serious a problem it is - but that severity was not recognized in "years long gone by".

        In the "olden days", Rh incompatible babies were simply given a VISUAL once-over and if the newborn "didn't look so bad" they were considered 100% okay and sent home with Mother.

        The more seriously affected Rh incompatible newborns were given a blood transfusion immediately. They were kept under watch for a few days and sent home.

       Basically, if the Rh Incompatible babies survived, they were considered 100% okay.

       They were NOT 100% okay!! Foetus' do not endure months of attacks on it's blood without some consequences. I am sure they just used to ignore it because there was nothing that could be done about it, before or after the damage occurred. We think differently now - it might be very helpful to know why we are having problems.

       We need to realize that there are a lot of people over the age of 40 that were affected by this condition, affected in ways that have never been acknowledged.

       To suffer from something like brain damage and not know it is to invite critical analysis that condemns us a lazy, or fakes. To know our deficiencies and limitations helps to guide us to the best life possible under the circumstances. I have often felt "misunderstood" - haven't you?



    ------



       They say that 1 in 1000 Americans are born with this condition today - a ratio that has stayed steady for a long time. An estimated 15% of the population is Rh-, half of them are females, and they are the ones who could end up with an Rh incompatible pregnancy.

       My mother was among them, an Rh- female who married an Rh+ male. They were lucky in that their first three children were not affected, but the fourth one was, but once again fortunate, that fourth child had a more-or-less normal appearance at birth and therefore was DE CLAREd to be "only mildly affected".

      I was, as you may have guessed, that fourth child.

      I had a cousin, born shortly after I was born. We both had this Rh problem. Neither of us received a blood transfusion despite having at least some visible signs of it at birth....

      He died, I survived.

     

      Consequences?

      I have been living with a chronic pain condition for 25 years, perhaps longer but that is how long it has been severe enough to disable me. I cannot work anymore.

       There has never been a satisfactory explanation given as to WHY this happened, or to WHAT it is exactly. Names such as "Chronic Fatigue Syndrome", "Fibromyalgia", "He is Faking", and many other names have been tossed out, but these are all just insultingly simplified and impersonal.

       I also had what they called "growing pains" when I was in my early teens. I would writhe in pain at times [but not when anyone could see me, that teen ego eh?].

      All through school I had a lot of difficulty with concentration and handwriting and hearing problems and coordination. They might call me "learning disabled" today, but back then it was just always report cards that said  "he could do better if only he applied himself more" and "do you want me to take my belt off?" [no, not a sexua| thing!! - just for whippings].

      I have long complained about not being able to "talk about serious matters" because I am forever saying things that I don't mean to say - something about "losing the words and substitutions with whatever words I can find" - typical of a damaged brain.

      It was only recently that I was reminded of this matter at my birth, the Rh Incompatibility, and I cannot help but wonder if it has something to do with my chronic pain condition, and other problems I have had for most of my life.

     

       I hope to hear from you if you were "an Rh baby" and especially if you can relate to the types of life-long problems we may be suffering as a consequence.



    * I included some NOTES  below about types of damage that could result from Rh Incompatibility.


       But first, I can't let you go without telling you about my "sibling rivalry" -



     "Sibling Rivalry"

       The way this problem begins is that the previous Rh+ child born to that mother "sensitizes" her to the Rh+ blood and mother begins to make antibodies against this foreign invader, and it is those antibodies that cause the foetus the problem [because they are antibodies against his Rh+ blood].

       That would be my older brother who sensitized my mother to Rh+ blood; it was HE who started her production of antibodies that attacked my blood in utero.

      Therefore I like to joke that MY BROTHER TRIED TO KILL ME before I was even born!!

       Talk about a serious sibling rivalry eh?? LOL.



    =============================== NOTES:


      The potential damage from low oxygen or the liver problem is wide ranging, but some specific consequences have been identified including:

      Short term memory problems

      An increased risk of Schizophrenia

     
    Specifically with the liver problem, a "deposition of bilirubin into the basal ganglia" can cause:

       Encephalopathy, athetoid cerebral palsy, and sensorineural deafness and vision problems.
      {Note - "Sensorineural" deafness and vision problems are where the ears and eyes themselves work just fine, but the brain does not process the nerve signals from the ears and eyes properly}


      As for the diminished oxygen, I am assuming that the foetus would endure some similar problems as general oxygen deprivation cases do:

    Cognitive Problems from oxygen deprivation:


       Short-term memory loss

        Poorer performance in executive functions. The executive functions include judgment making, reasoning, and processing information. The person with HAI may become impulsive and indecisive. He or she may lack the ability to concentrate or to focus on more than one task.

        Anomia. This term means having difficulty using words or processing what words mean. The right word may not be remembered or a word may be placed out of context. Sometimes the opposite word is used; for example, a person wanting to say “sunny” may say “cloudy” instead. Common words may not be understood.

        Visual disturbances. The person with HAI may have trouble processing visual information.


    Physical Problems from oxygen deprivation:


        A lack of coordination. This is called ataxia. The person’s gait may be wobbly; they may weave or stagger like someone who has had too much alcohol.

        An inability to do common tasks. This is known as apraxia. The person may be unable to remember the sequence of common tasks like brushing the hair or drinking from a cup.

        Movement disorders. The person may experience spasticity, rigidity, and myoclonus (muscle spasms). The patient may have involuntary movements, jerky movements, or trembling.

        Quadriparesis. The person may experience weakness in all four limbs.

        Headaches. Anoxic brain injury can also cause confusion, depression, hallucinations, delusions, personality changes (such as increased irritability), and the inability to concentrate.


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    • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  #173445     11 y     4,145
      I was born in 1955 -a "Blue Baby." I had 3 blood transfusions. For the past 10 years my health has been going down the tubes! Despite being pretty fit I have been diagnosed with: osteoporosis, osteoarthritis, seronegative arthritis,cognitive dysfunction, raynaud's and vasculitic neuropathy. Do I think there's a correlation... YES! The problem is who cares! Now that modern medicine can treat pregnant women with RH factor incompatibility people like me will soon no longer be a concern.
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      • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     11 y     4,016
        Gee, sorry, I didn't see your comment until now - but that is very enlightening, exactly what I was wondering about.

        And you are right - "who cares about us?" - they won't even take my symptoms into consideration because these symptoms don't fit a known [or popular?] disease profile.

        Or is it that there isn't a specific PILL for these symptoms? Morphine is how I survive... but now they don't want to prescribe it so they are cutting my dosage down.

        Throw us to the dogs eh? Sorry to hear you are suffering. Hmmm, I am at a loss for words...
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    • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  fishingfool42     8 y     2,689     2 of 2 (100%)
      Hi Karlin,
      I am a 59 year old male and in the past few years I have begun to wonder if my numerous health issues might be attributed to my RH disease. I am the third child of three that my mother delivered. She was basically warned not to have a third child due to the RH antibodies that had built up in her blood. The information that my mother provided me was that I looked a bit jaundiced at birth but otherwise "OK." She also told me that I did receive 2 complete blood transfusions during my first 48 hours of life but that was about all the information I was given. I have had numerous emotional and physical problems starting from an early age. I will do my best to list them all in (semi)chronological order. I was born with partial hearing loss in both ears which I understand was common with untreated RH babies; severe tinnitus which I deal with 24/7; ADHD which I pretty much knew I suffered from but wasn't positively diagnosed until my mid 30's; depression and anxiety which I am taking medications for; a pre-cancerous condition caused by acid reflux called Barrett's asophagus; severely bulging discs in both my neck and lower back which causes me moderate to severe pain and numbness in my left fingers; diverticulosis with occasional bouts of diverticulitis.I had multiple surgeries to repair hernias and hemorrhoids; arthritis in numerous joints; angioplasty with 5 stent placements; neuropathy of the pudendal nerve;(might want to look that one up as the symptoms are many and some very cruel.) proctalgia fugax which may be related to the neuropathy which causes occasional fleeting severe pain in my rectum. So painful that I sometimes end up curled into the fetal position in bed until the pain passes. Thankfully it passes in about a half hour; almost total loss of my tooth enamel which caused an inordinate amount of tooth work which recently culminated in having all my teeth crowned, and just last year I almost died from septic shock brought on by complications with gall stones and virtually total breakdown of my gall bladder. I know that I'm forgetting some problems but I think you get the idea. I remember you talking about your report card usually saying something along the lines of "An intelligent person but needs to apply herself more. I wish I had a dollar for every time one of my teachers told my parents that or wrote it in the comments section of my own report cards. Talk about frustrating, knowing that you really were trying your hardest. There is a website called patient info that I recently found. It has a thread that was recently started dedicated to this same subject. We are hoping that more and more people will join the group and share their experiences with us. There is so little information out there for people like us.
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      • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     8 y     2,864
        "Oh come on, I wrote that" lol you have so many things the same as me. You have a longer, more tortured list than mine, but the infancy/childhood was very similar, and you are a FISHING FOOL!!

        I assume you go fishing. I had the greatest summer in 30 years this year because I found a fishing partner. And, I also caught BIG fish here for the first time too. Such excitement!!

        And I nearly died on a solo fishing trip... [ask me if curious!]

        And 59 years old, me too. And, I am male also ["Karlin" is just a nicname]

        I am sorry it took a year to reply, I hope you write back bud!!

        my main email is
        kevkvisle@gmail.com
        if you want to contact me directly, which is what I am hoping for, just to compare notes, etc.
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    • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  td1355     8 y     2,936
      Hello,

      Reading this post was an eye opener for me. My ex-husband came from a family affected by this. His mother was rh-negative and began having children in the 50s. Of 5 children, two have now been diagnosed with schizophrenia. Both needed transfusions at birth. While some people can function somewhat with the condition, unfortunately these two women have been almost completely incapcitated and require 24 hour supervision. From what I understand signs started in the their teen years with trouble at school, academics, and social life. Children would call them "dumb" or "retarded". My ex (born in 1970) was the youngest of the group. I think it's exactly what you said. My ex did not require a transfusion at birth and he must have seemed okay, so they sent him home. But I think he was significantly affected. The longer we stayed together, the more I saw it. I am almost positive he should have been diagnosed with a learning disorder as a child. At 40, he was reading closer to a 2nd grade level. I noticed he could not keep a job. Following directions, memorizing information, paying attention seemed so difficult for him. Inevitably, supervisors and co-workers would become angry and lash out at him. His thoughts also sometimed seemed illogical.I noticed he would sometimes use the wrong word for something. And there were times when he'd miss what to me were obvious social cues. Whenever I tried to bring it up and ask that he get help he would become angry and defensive - which was a major factor in our marriage ending. I always felt that it was more than a learning disorder but I also felt it wasn't fully schizophrenia. To my knowledge he never had any halluncinations or delusions. But I (and people we were around) noticed that somehow he saw the world in bits and pieces. Like we'd see 1,2,3,4,5 and he'd see 1,3,5. I think if he could be less defensive and get some help he could live a much more fulfilling life. But years of stigma and defensiveness in his family surrounding his two sisters have made it really hard I think for him to get there.
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      • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     8 y     4,931
        Wow, TD355 - I wish I had read your reply sooner, sorry I have been away... so to speak lol.

        Your ex sure sounds a lot like me, especially that anger. I worked so hard to learn how to keep my anger down, and I did it until I got involved with a woman again. I think we have some special problem with the women we go for... odd, yes, but humans are complex creatures!!

        The frustration of living in a cookie-cutter society, but being not only different, but also lacking in some essential skills like memory, would drive anyone to rage once in awhile. Worse yet when we are told there is nothing wrong with us "except for a bad attitude" - arrrrrRRRRRRGGGGG!!! [Oops, my anger got out there - back in your cage you].

        Again, sorry for taking so long, I hope to hear how he is doing, and you too.
        You have some insights from an observer viewpoint, which is very valuable to us who only see it from the inside.

        Karlin.
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    • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Tvryan     7 y     6,328
      Hello,
      I was born in 1961 and had a severe case of rh disease at birth. Mom something neg me o pos. I am told I was given The Last Rites shortly after birth. My mom once told me there are no pics of me as an infant because I was so ugly. I can imagine so! I have all the signs and symptoms described herein. Does anyone know how I can possibly get this Adult Rh disease thing recognized so I can attempt to get disability? Ihave worked so hard all my life and I just didn't understand why my mind and body was failing me now. Sometmes,actually alot of the time, when I go to bed I just pray for God to take me. Can ayoe help? Thank you, Tnamarie.
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      • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     7 y     5,267
        Tvryan - I do feel, and know, a bit of what you are feeling as our body betrays the faith and positive thinking, and the exersize we gave it and the good food we fed it.

        And then some lardass lays around and eats junk food every day and gets through life like a breeze and we feel compelled to ask "why ME"?"

        We have to ignore the unfairness and try to be as well as possible, but it is so difficult to keep shoving that rock up the hill sometimes.

        I am the problem Rh too - a cousin of mine was born the same week, we had exactly the same symptoms at birth, but that was in the 1950s [before the breakthrough diagnostic test and treatments in utero.

        He DIED, I lived.

        I should be gratefull I guess... but I attempted suicide recently and that is not being grateful for this gift of life. I am so emotionally burnt out... its so hard to keep going.

        Sorry to say so, but the medical industry is not responding to the calls for help on this Rh issue.

        The guidelines for disability status are probably a bit different where you are.
        Here, in BC Canada I didn't have to have a definite diagnosis, it was enough that I had a Doctor statement outlining my limitations.

        The degree OF Limitation they look for is along the lines of UNABLE TO DO THE CHORES OF DAILY LIVING.

        and then when accepted they say we are expected to find some paid work to do... they allow us to earn $500 mo without docking our dole.

        I was turned down on my first application = I hear that that almost everybody is refused on their first application for disability income and status ^so dont give up after one refusal.... I hope they don't make you do that.



        Good luck.

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    • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Alexp1218     6 y     3,977
      I too was a blue baby as was my sisters. We all three had transfusions I was diagnosed with Multiple Sclerosis when I was 34. I’m now 47 and in constant pain. That is part of MS so it's not a surprise.
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    • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  David Biron     4 y     1,750
      I too was a "blue baby". Have many chronic conditions of the back , severe tinitus, irratability. I just chock it up to "old age", despite the fact I have always been physically active , not even 5 lbs overweight . I have always struggled to "keep up" cognitively with my peers.
      What I would like to know is, how many "blue babies" had a close relation with their birth mother ? My relationship seemed strained from the start. Mother could not hold me for 6wk NICU, until birth weight > 5 lb. Of the 5 boys she gave birth to. I was #2...and always in her cross hairs if you know what I mean. Any others with "strained" relationship or lack of bonding experience ?
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      • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     4 y     1,719
        Sorry for the late reply, crazy life, you know...

        Good point - there may be biological reasons for that distance, maybe mother "rejects the baby" in some way that she might not even be aware of.

        It is a worthy survey - we should scour the web for studies on that. Sorry, I should.

        Because yes, I would say that my mother and I were somewhat distant. But there is cultural too - "cold northern Vikings Vs Southern warm hearts" kind of cultural thing.
        Dad NEVER hugged. But they know now that the un-hugged infant suffers changes in the brain, and carries certain trainst through life, for the most part. Some get around it. But it is not replaceable.

        Gee, sorry you had that loss of needed love - I can relate, yes.

        And then we just Live as well as we can eh?
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      • Re: Rh Incompatibility in the 1950s - Long Term Consequences   by  Karlin     23 mon     1,402
        I guess you know I was a blue baby. As for the strained relationship with mother, I would have to say yes. It was just the way of the 1950s “not to coddle the kid, you will spoil him”.

        Hugs and affection were considered to be suspicious, possibly communist in origin. Or, like that, sorta.

        There are other dynamics with siblings - the newborn gets the attention, and the other infants resent this “taking mother away from me”.

        Thanks for the reply.
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